Gina Keely is a mother of 3 children, her youngest daughter Paige passed away in 2018 due to a ruptured AVM aged 6.
Article About Hereditary Hemorrhagic Telangiectasia
03:45 Arteriovenous Malformation
16:29 How Stroke Can Affect Our Way of Living
26:27 Gina Keely’s Advocacy
37:06 Ignoring The Symptoms
46:34 A Voice For The Paige Keely Foundation
56:32 Hereditary Haemorrhagic Telangiectasia
1:01:27 The Emotional Toll
1:10:37 Being Vulnerable
How are you guys? How are you going? How’s things?
Very difficult. It’s almost like I can’t even explain it. It almost feels in a way like, we just live two separate lives. You know, we sleep in the same bed, we go through the motions, but it feels like we’re going through the motions of life. We’re going through the motions to raise our other two children to the very best of our abilities without screwing them up with our sadness. We try to laugh, it has just, rather than bringing us closer, it’s brought us apart.
This is the recovery after stroke podcast, with Bill Gasiamis helping you navigate recovery after stroke.
Bill from recoveryafterstroke.com This is Episode 141 and my guest today is Gina Keely. Gina is the mom of three children and in 2018 Gina and her family had to deal with suddenly and without warning losing their youngest daughter Paige, due to a ruptured AVM while she was at school.
Paige was just six years old. This emotional episode of the recovery after stroke podcast Gina and I discussed the day of her daughter’s death, what the loss has done to her family and how Gina is determined to make something good come from this tragic situation.
Gina created the Paige Keely foundation to raise money and awareness about AVM and open an AVM screening clinic where people can go and have a low-cost MRI of the brain to detect AVM and other neurological conditions early and save lives.
When you listen to this episode, make sure you have some tissues handy. And when it finishes, please share and like this episode on whichever platform you are listening or watching. Sometimes I forget why I started this podcast. But after this episode, once again, I am reminded it’s to raise awareness of the plight of stroke survivors and their families and to honor those we have lost.
If you can support the foundation that Gina Keely has created. In honor of her daughter, Paige, please visit the paigekeelyfoundation.com and make a small donation. All links to the Paige Keely Foundation and the donation pages will be available on the show notes. Thanks for listening. Gina Keely, welcome to the podcast.
Thank you. Thank you, Bill. Nice to meet you.
Lovely to meet you too. Thank you for being here. The reason I contacted you is because, you are the founder of the Paige Keely Foundation. And it’s something that I assume is not something that you would have preferred to be associated with ever. But you are now. How did you come to be the founder of the Paige Keely Foundation?
Well, I never thought that I would ever do something like this. never, I never even thought I just never even knew other than donating to foundations, and what they were all about.
So I lost my six-year-old daughter Paige to an unknown brain a VM, which is, as most of us in this area know is arteriovenous malformation of the brain. And I don’t know if you want me to go into what happened with her and how we came to be.
We’ll do that in a moment.
So, after losing Paige, it’s almost sink or swim. I have two other children and I am married. I have a home. I had a wonderful life. I had the most beautiful, amazing life anybody. It was like, you know, for the most part a dream, a couple fights here and there but I had everything.
And I lost it that day. And it was either. I just felt myself sinking into a really bad place. And I knew that I wanted to make a change and a difference because we were told that what took page’s life if we had known sooner, it was treatable and she would have survived and she’d be here today and most likely quite healthy. And coming up on her 10th birthday.
So how long ago did you lose your beautiful daughter?
We just had the third anniversary, it was January 8 of 2018 that it happened.
Yeah. So what was that day? Like? How did it start out? What was going on?
The day was great, I had the three kids all my kids were at that time they were six, seven and eight years old. So we always have a little bit of a madhouse, and I was always kind of crazy in the morning, you know, I just kind of like let stuff roll, we would put music on and just dance around.
And usually they eat a lot of pancakes just I’m a bad mom, I sugared them up before school then would make a mad run to the bus. And Paige was always my firecracker, my wild third child. And I don’t know what it was, I always just let her beat to her own drum.
And I always just would say, Oh my God, you’re so cute. You’re only six once. I don’t care what you wear. And do it. It’s so cute. And sometimes she’d wear makeup to school. And I just thought it was really cute. I was like, go ahead wear makeup, crazy outfits.
You would have been a terrible mom for letting a six year old wear makeup.
It was so cute, though. So cute. And, you know, we ran to the bus Paige was happy, healthy. Perfect. All three went to the bus. I went out about an hour later, did my food shopping. And I pulled into the driveway. And I got a call from school nurse that said Paige was in the office and she’s really upset, she has a really bad headache.
And like I think you should come down. And Paige was not a frequent flyer to the nurse’s office. So it was very out of character. And no sooner did I pull out my driveway. And I made it not even to the end of my block. And they called me back and said we called 911 Paige is unresponsive.
And I was like what? What are you talking about? Like, she has a headache. You know? And I was like I’m right here. I was like three minutes from the school. So I got right to the school. And I pulled up the ambulance had already arrived. And I walked in and everybody’s faced was just like, they looked like they died or something.
And I walk in and I look at page and I’m like, Paige, you know, and she was out. She was not speaking, she couldn’t even look at me, she was having seizures. You know, I described it as her body was like flailing around and like what’s happening to her? And as a mom, you want to freak out and go completely insane.
But I wasn’t thinking like anything. I said, All right, I’m gonna be really calm and cool. And I don’t want her to feel my energy. And they got her in the ambulance. And she just she was, never looked at me never responded to my voice and she was having seizures, the whole way there.
I knew something was really wrong because the ambulance drivers, they seemed like very rattled, like, what the F am I going to do it because I was just like, stop making her have seizures like stop this. And the ambulance ride was relatively quick. But by the time we got to the hospital they were on top of her doing compressions.
And I didn’t know at that time that she was about to code for the first time. So they got her in a room. Got her somewhat breathing. And it took a long time to get her I guess to stay alive long enough to get a scan to see what was going on. They determined that they thought she was having a stroke or a brain bleed.
And she coded several times. She was intubated, obviously. And they got her strong enough to where they said, we’re going to go in and try and operate. And the doctors looked at my husband and I and said, the situation is extremely grave.
We really can’t tell you what the outcome is going to be. But either way it may not be very good. And by that time, my husband, I don’t even know how he did it called our family, because we knew something was so wrong, and she didn’t survive surgery. We were put in that room that they put you in, in the hospital, you know, to keep you calm, keep you quiet, keep you with your family.
And I remember, like, I was just like flailing around. It was an out of body experience. I felt, like something was happening. And I heard the hospital, like announced like a code. And I saw they had assigned a nun to our room. And I saw her looking at her phone. And I knew, and I remember I said horrible things to her too I was like, screaming at her.
And I felt so bad. But she was so wonderful to me. I mean, I called her like everything under the sun. And I couldn’t help it. I didn’t know why. I was just like, leave me alone, you don’t know. And they came in, and they said that Paige didn’t survive. The doctors were crying. They couldn’t control themselves it was horrible.
The staff in the hospital, I mean, people were just walking out. Because they couldn’t take it. It was just so awful. And my mom came after that she doesn’t live so close. And it was I still don’t believe it. I really don’t, like I keep myself so busy till I’m just exhausted.
Because if I stop to think, then I lose it. And, so after she died the doctors you know, I asked them like, what happened? And he said she had this brain bleed, and she was likely born with it. And this disease, if it’s not detected early, and they rupture, you know, you have usually one of two ways to go.
And he had said the way that hers ruptured, and where it was. He said that even if she did survive, she would have been, you know, what they classify as like a vegetable. He said she wouldn’t have been able to breathe on her own, she wouldn’t have been functioning.
But you know, at that time, I wouldn’t have cared what she’d look like. And he had said that she was most likely brain dead by the time I got up to the school. He said it was so severe. So yeah, it’s ripped my family to shreds.
Yeah, makes sense were the children with you at the hospital?
Thank God no. My girlfriend she was with me the entire time. And I often just feel horrible for her. Like, as another mom and she watched the whole thing. And her husband went and I asked her, you know, please pick up Maive and Ronan from school and take them back to your house.
And we had them come home. Later that night, they drove them home. And you know, telling them that their sister was gone and they had made cards for her and said get well Paige we love you and their friends did. And the school was making little cards and you know it was it was horrible, horrible.
And it’s so horrible for them now, because they were so young. And now you know, they see what’s happened to our family, they see what’s happened to me and my husband, and we’re just really different people. We live very different lives.
Very different lives. We’re extremely unconventional, we let anything fly within reason. We don’t really eat dinner at the dinner table, we kind of eat in the den or wherever. And I just, I care less about stupid, stupid shit. I really just, I’m like, just live. I try to avoid myself of any thing that is not worth it. And my focus is my kids, and trying to continue to be a good person.
Do you have children?
How Stroke Can Affect Our Way of Living
Yeah. Such a tough thing. I mean, I don’t think I would comprehend at all, what you’re going through, if I hadn’t had what you’re daughter had. And I contemplated the possibility that I wouldn’t be around. And then I contemplated the possibility of, you know, what are my kids gonna think of me if I die, and how do I make good on relationships that I’ve stuffed up or been, you know, short, about, or whatever, and amended, had all that time, to mend stuff, and to do all those things.
And to constantly strive to put my foot down in what I want to do and how I want to do it, and what I want to leave, and then, and then I’ve got other people in the way or part of that part of my life, who they’re not in the waste, per se, but you know, they’re living their own version of their life, and I’m trying to live my own version, and my own version is a little bit more, like you said, it’s a little bit more different than it used to be.
And I have a lot more expectations about not having expectations and bullshit stories, and I haven’t got time for rubbish conversations and any of that, and the people that are going through that, with me, are struggling around me, because I’m not letting them get away with being ridiculous.
And it’s causing problems like causes problems for me. And I’m living it from somebody who had the experience of the AVM, the surgery, the bleed all that stuff. And you’re living it from the person who doesn’t have the person around that went through that. And the person that you knew was your daughter, you gave birth to her, you raised her you created her you gave her life, and then something so ridiculous took that from her.
And you were never to know. And neither was I and neither are all the people that I’ve interviewed who have AVMs or had AVMs that have burst. And it’s the ones that I’ve interviewed, only the ones that survived, I haven’t interviewed, the ones that haven’t. So it’s such a shit thing. And we went through, it took me about nine years to get back on track, back to my old life and all that kind of stuff and other people take longer, and they struggle further.
And that’s the survivors, that’s the AVM survivors. Then what happens to the families and this is what we don’t get. We don’t get the stories from the families who are impacted by this. So it kind of gets glossed over that it’s a life and death thing. It kind of glossed over that AVM is not something that you know, I used to wear it as a badge of honor.
And it’s not really something that’s a badge of honor. It’s something that has taken a lot of lives and just suddenly without any idea and I reckon about three years after I started going through all the dramas. I was at a funeral for a guy who was sitting in his chair. He was a friend of one of my wife’s friends. Sorry, he was the husband of one of my wife’s friends.
And he was sitting in his chair, and they found him in the chair, the way that he was sitting. They left him there watching TV, while the wife took the kids swimming, and they came back. And he was in the same position when they spoke to him. He didn’t respond, and they said, stop playing games.
What are you what are you doing, and he was gone. So I’ve had a little bit of time, only a small amount of time to think about, like what really AVM means. And what it means is for a lot of people very different things for some it’s permanent disability for their entire lives, for some of the invisible disability which messes with you and stops you around like it does with me all the time.
And for others, it means losing their loved ones. And that’s such a serious thing. So I’m glad we’re talking about this, because this is the only thing we can do. We can only talk about it. And I don’t think anyone has done what you’ve done. They haven’t gone down the path of problem-solving, I suppose I don’t know what it is. And I don’t know why you do it. I don’t really care why you do it, I’m just glad that you’re doing it.
Because this is why I do the podcasts to raise awareness, bring stories together, connect people make them feel like they’re not alone. And also spread the word, the good word of the work that they’re now doing after their experience, because a ton of people are doing amazing work spreading the love, so to speak and making about other people and trying to not make it about them. So does it help you that you’re now making it about other people and saving other people and making it less about you, although it definitely is about you and your family. How does it help you do that?
It does. Bill, it’s interesting, because I just actually got asked that question earlier today from someone, you know, how, you know, are you okay to? And I said, Yes, it’s almost like, I feel like this is just what I do now on in a sense. It makes me feel good that I can give comfort to someone. For an example so a girl that I went to high school with we graduated together.
And she reached out to me just over a year ago. And she said my daughter just had an AVM rupture. And I was like, what, you know, and she said, Gina, I hate to ask you, you know, but she’s alive. And so basically, her daughter 160 days in the hospital. She clung to life, multiple times. I mean, and hers, it was so bad, they couldn’t even operate for a long time. She was completely immobile, not speaking, just horrific, horrific.
And 160 days, she finally made it home. And I communicated with the mom the whole time. And she shared with me pictures. And you know, that was like, people need to see that. And you don’t want to I’m not looking to make a spectacle of people that survived. But for people to see the children that this happens to that are fortunate enough to survive, or in some cases, unfortunate because their quality of life is destroyed.
And there are a lot of them that I mean, they can’t speak they can’t breathe. They can’t do anything on their own. My girlfriend’s daughter, thank God. Her speeches is very off her physical limit. She’s very limited to what she can do. But hopefully she’ll be stronger and stronger, and she’s home and she’s alive.
I get messages from usually moms a lot all over the world, all over the country. You know, I found your page, I saw your videos and can I talk to about my kid’s AVM? Can you know? And we share the same story? What, what happened to you? What happened to your kid? Where were you? And my biggest question that I asked everybody is, what did the doctors tell you? And they’ll say, and they’re like, What do you mean? I said, we’ll what did the doctors say? How did your child get it? or How did you get it?
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I’ll make matters worse?
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. head to the website. Now, recovery after stroke, calm and download the guide. It’s free.
Gina Keely’s Advocacy
And they’ve only told us we’re born with it we’re born this way. And I said, Did they say anything else? Like was it curable? And said, yeah, if you detected it early, and I’m like, how, in this day and age, are doctors, and just accepting the fact like, Okay, you know, it’s horrible for them. Sure, you lost another patient. But you know, we have a disease right here in front of our faces, that a simple scan, and awareness can detect and I get these fights suck. It sucks to do this. It’s really grueling, you don’t get paid.
But I know it will be so rewarding. Once I get to that level, you know, once somebody really hears what we’re doing, and finally he comes back and was like, you’ve saved my life. I’m alive. Because I forced my doctor to give me an MRI scan, or now that this is approved, and it’s talked about, I went into a screening facility, and I’m here, or maybe they found brain cancer, or maybe they found an aneurysm or there’s just so much stuff.
So I’m so so passionate about this, like, you know, I’m like, where the Mothers Against Drunk Driving started, you know, to that one mom, whose kid was killed. And you either lose it, or you go after the person that murdered your kid until your death. And that’s where I look at this, it’s a murderer.
It’s just, it’s a serial killer, that we know where it is. But nobody’s tackling it, nobody’s killing it. And I have been so fortunate to start this foundation and learn how to do this on my own, mostly because of COVID. Because I had nothing else going on. And I learned how to do a website, how to set up the bank accounts and the 501C3 and all that.
And I went up, getting in touch a local mom here reached out to me who works in a stroke and brain aneurysm center. And she heard that I want early detection. And the doctor that she works with she goes I walked in and I said hey, you know, she goes, this woman lives in my neighborhood and just I think we could do something.
And the doctor was like, yeah, we can. He said, let’s talk. And within a couple of days, I was on the phone with him. And I just never thought I’m like really? Is this possible? I said, I know it is but are you really talking to me? You know, like, I’m like a no one. I’m just like a really sad, pissed off mom. And they’re amazing, like, amazing what they do.
They take time out of their schedule. They don’t take any money from my foundation. They’ve developed a screening program where they screen people for free. And they because I’m not a doctor. They fight like hell to get MRI scans approved for people. Because as you know, that’s the key to this. A screening will only take you so far. But we got to get the scanning done.
Now that you say it, it sounds so obvious because when you’re scanning someone’s brain, there’s so many things that catch people unaware that often get too late that could have been prevented just by knowing. And in Australia, there’s free breast screening for breast cancer for women above a certain age, there’s free prostate checks for men above a certain age, the government sends a parcel in the mail when you are above 50 years of age where you put a sample of your poo, so they can test for bowel cancer.
There is ovarian cancer screenings, there’s, you name it, the amount of screenings that we have that are for free, in this country. That it’s all for free. Because we pay for our, in our taxes, we pay for our, you know, our Medicare system, similar to what Obamacare was trying to achieve something like that. We pay for a percentage of our tax dollars go directly to the Medicare budget, and there’s free Medicare for everybody.
So for me, my brain surgery, my three years in and out of hospital, all my scans, every single thing was absolutely free and not a single dollar out of my pocket. So it’s impossible to even put to comprehend that because, for me, it’s just normal. But I know that I speak to a lot of people in the US and other countries, and they’re like this cost me $100,000. And now I’ve got to come-up with the money, and I’m half, you know, half stuffed, and I can’t get back to work and all this kind of thing.
And I’m like, wow, I get it, I totally get it. So for us, this all just happens. It’s part of the process. And there’s a lot of amazing foundations doing work raising money. In Australia, it’s the Stroke Foundation, their job is to, they have a mandate to prevent stroke, increase quality of life for stroke survivors, and to raise awareness.
So they have that job. They are funded by partly the government, and then partly by other supporters of the nonprofit. So people from corporations, or perhaps they are, you know, other people that have been affected by stroke, they do regular drives to raise money through the community.
So that stuff is happening. But no one has thought ever, I’m pretty sure to add screening of the brain to this list of free stuff that’s getting done. Because if we did, we would save a ton of money, lost productivity, and save lives. That’s exactly what we will do. And this is what you’re trying to do, you’re going this is going to reduce harm, it’s going to decrease trauma, it’s going to save lives, it’s going to put you in a position of power and in a position of control of your ailment or your issue in your head. You’re gonna know more about it it’s not going to catch you off guard. It’s not going to tear families apart.
Yeah. And in this day and age, it’s we do so it’s preventative medicine, that’s what everybody supposedly strives for. Why are we opening all these tools up, the faster that we find all of these diseases that are just killing people? Like, it’s right there in the back, you know, it’s in your back pocket it’s right there.
And it just doesn’t get approved here in the United States. And it’s, you have I mean, you literally have to you have to go to either a great doctor that’s willing to help you. Okay. And that will has the staff that’s able to sit there and fight with insurance companies for hours on end.
Or you have you know, doctors that they’re so busy and inundated they don’t have time for this. Their staff does not have time to sit there with your insurance company to fight for a scan. They didn’t want to approve my other two children to get scanned. Like why they don’t have that there’s nothing wrong with them like you don’t know that I just lost a child and you’re telling me no because You don’t know what’s wrong, with my kid, you have to find something wrong. And then it’s too late. In most, you know, whatever.
Yeah, it’s too late because if it bleeds, then it’s lifelong after that it’s too late. Even if the person survives, it’s too late because you already been through all this shit you already ended up in hospital, you already traumatized everybody. It costs so much time, money and effort and productivity and everything out the window, you got to crawl for the rest of your life to get that back.
You you got to go kicking and screaming to just get back some productivity and the rest of it, it’s already too late, even if they survive. So, you know, I went to hospital 18 months before the first bleed with a crazy, weird, wild, ridiculous headache. And they did a CT scan. They didn’t do an MRI. And the CT scan didn’t reveal the AVM.
I hear that so often?
So what I didn’t know is that in Australia, an MRI cost about $560 or $600, depending on where you go. What I didn’t know is that you could pay for that I could just pay for that privately. If I can afford it. I can say, go to my GP, a general practitioner asked for a referral, go to a radiography clinic and say, here’s my money pay for me to do this scan.
I could do that. So I would have paid anything to know what I found out 18 months later, when my entire left side went numb, and I ended up in hospital. And then at about midnight, the doctor said to me, oh, by the way, we found there’s a shadow on your brain. We don’t know what it is. And then it took them. And then six weeks later, it happened again after they told me to go home. Because they couldn’t see beyond the shadow, which was a blood.
And they didn’t say like they knew that there was blood that they were calling a shadow.
Ignoring The Symptoms
Yeah, they knew it was blood they knew was a shadow. They didn’t know what was causing it. They thought they said to me, it could be a tumor cancerous, it could be a faulty blood vessel, it could be all these things we don’t know. And right now the risk of going in there is pretty high that we’re going to cause additional damage because we don’t know what we’re dealing with.
Go home and we’ll see you in in six weeks. Because for me, the numbness spread from my big toe to the entire left side over seven days. So the bleed was happening very small amounts like it was a microbleed. So that was what kind of lead them into this false sense of security.
And then what happened was about six weeks later, I started to get dizziness. And I started to feel nausea and felt like vomiting and, the room was spinning and everything. And I got to the hospital and my wife dropped me off into emergency and she was going to go park the car.
And then in that time where I walked on my own 50 meters, I got to emergency and I don’t remember anything after that, I didn’t know my name, who I was what I was doing. None of that stuff. I just remember waking up my wife was at the end of the bed. I didn’t recognize her I didn’t know who she was and I spent another three days in hospital.
And now the bleed had gone from being this small shadow probably the size of a dime, to a golf ball size, like it was huge. And then that stayed in my brain almost for three years by the time it slowly, slowly, slowly decreased in size. By about the two and a half year mark.
I was being monitored the whole time, it bled again. And this time I was in the city driving around and I felt a burning sensation on my left side. And I drove myself to hospital, I made all the wrong decisions. But I did them and somehow it got me there. I drove myself to hospital got there. And when I got there, I went into the emergency I said to them I’m having a bleed in the brain right now.
And it’s tough to do something about it. And they were doing the poor doctors and nurses they were just doing the whole alright, no worries. Tell us about yourself. You know, this crazy guy telling us he’s having a bleed in the brain. And I’m like, just give me a scan straight away right now. Anyhow, I eventually got them to I’ve convinced them to get me into the MRI.
They went through the process of course, they brought up my details, they found my history. And then the room was full of radiographers, and they were all wanting to see who’s this crazy guy that came and is telling us he’s bleeding in the brain. So anyway, then they found that and then we had surgery about a week and a half, two weeks later, my surgeon finally said, look, we’re going in, we have to go in, we’ve got to remove this thing, it’s dangerous, you know that it’s dangerous.
Your risk of becoming sick and dying from this and unwell while you’re driving or working, or whatever is really high now it’s higher than what it was before. So are we doing this? You know, are you up for it? And I said, Yeah, I’m up for it. Let’s do it. I trust you, I believe in you.
By now I had done enough, I had enough time to prepare my body, prepare my head counseling, coaching, meditation, food, the whole lot, like I had done so much so that I could be really ready for this surgery should it need to happen. Last thing I did was when I went into surgery, I told the doctors Look, you’ve got the best patient you ever gonna have. I’ve prepared myself for this, like you get the best body, the best thing, everything’s gonna get perfect for you guys, because of all the work that I’ve done in three years to get here.
They were like, who is this crazy person, let’s open his head and shut him up, you know. So when I woke up, I wasn’t able to use my left side, and I had to go to rehab, learn how to walk again, use my arm, again, all this type of thing. But that’s just an example of this is all these are all the things that I had time to do, because even though it bled, I now knew what I had.
I now knew what was in my head, and I could plan and I could strategize, and I could put things in place. And in that time, I mended relationships. I told people, I loved them, I hugged them. I apologized. I did so much. And this is what you’re giving to people. This is what happens when you do this and find something wrong and someone’s brain years before it does anything to them. Gives them time to do stuff. And I’m so grateful that I had that time because most of the people that I’ve interviewed that had an AVM had no time.
Yeah, no, I can’t believe that. You were walking around like that, for that long. I mean, that’s like, that’s wild. That they didn’t want to operate or try any radiation or something. I mean, that’s like.
Yeah, it’s crazy. And the thing about it is that makes the people around me feel like it’s not as serious as it is.
Yeah, cuz you’re walking, you’re talking, you’re like oh. Right they don’t.
How could they, and I get it. It’s no problem. But that’s what happens. It allows you into this false sense of security. But then when it bursts, the third time, I was like, Man, this is serious shit. Like, can’t stop this happening. It’s just happening. We’ve got to get rid of it. And whatever I wake up with after surgery, I would rather wake up with that, than this thing, just going one day, and that’s it all over. And I’m not around, and I can’t speak to people that I love and all that kind of thing.
So when I came across your page, it took me a while to get in touch with you. It was so difficult to know how to respond to your posts how to even put a comment on it because I wanted to put a comment on it. And then I thought I have to find a way to overcome all of my stuff to get you on here because what you’re doing is so important. And I want to make sure that as many people as possible, hear about this and learn about this. And I feel like that I feel like we have an opportunity to grow this thing beyond your state, your place where you live and take it global.
Oh, we have to I have to.
I don’t know how but I think this has to be an it can be one of those things. You know, we hear about Red Nose Day. You know, we hear about stroke week we hear about stroke month, we hear about wear red for stroke. We hear about all of these causes that are amazing and they’re raising awareness for this specific little challenge that they’ve got in life.
You know, and I think we need to take it to the next level and do something about this because I’ve been passionate Since 2015, when I started this podcast, not really knowing what the hell I was doing it for what the purpose of it was, and I think I just realized what the purpose was.
Yeah, it takes time. And it takes an army and, patience and determination. I remember when I started this, you know, I’m still learning how to use Instagram, I still screw it up constantly, I lose messages. I’m all over the place. But I had somebody reach out to me from one of the biggest organizations, and this was before. I don’t have a lot of people like following me now. But I am getting well known, you know, I have been in the press.
And they were like, so you really think that you’re going to be able to do this? I’m like, of course. And they said, Well, what are you gonna do it the money that you raise, and I said, I’m not gonna do anything. It’s going to sit and I have complete control, until my vision and my dream of opening a screening center or, you know, a facility, perhaps buying a machine.
Once that’s done, that’s where my money goes. And I said, If I fail, I’ll call you. And I’ll give you a donation. Otherwise, this is what I’m going to do. And it’s great, because I don’t have anybody telling me, you know, I never heard from that person again. They never called me.
A Voice For The Paige Keely Foundation
And they a were very big organization. And I was like, a deer in headlights. I’m like, Oh, my God, they’re on the phone with me. And they respectfully, so they wanted me to partner with them. Because this is a really uphill battle. It’s very hard. And if you don’t have big money behind you supporters and big voice that’s why I keep trying to find a celebrity voice. You know, just keep getting out there because people listen to them.
Some of them shouldn’t even speak, but yeah, they do.
But everyone listens to them. But I did find a celebrity there is. There’s a country singer, Great White. I’m not a country fan. But I love music. So his music is pretty cool. Seems like a super cool chill dude. And he did have an AVM rupture. And he spoke very openly about it. And he probably thinks I’m some psychopath insane person, I’m gonna get arrested one day. He’s like, she’s cyber stalking me or something.
But I messaged him.
Did you get him on a phonecall?
No, I’m like, could you call me please? I promise I’m a normal person. I said, I just need help. I need a voice. And I hope he probably well, he must not think I’m that much of a psycho because he hasn’t unfollowed me. But that’s how stuff happens. Like, you know, we get all these big people behind these foundations.
And, you know, or a celebrity to sing a song about something or someone. And then it raises attention and people like, Oh, I know someone who had that I know someone who had that. And it just, but I don’t have that. We don’t have that yet, we will.
Well, we can get this interview to Drake, and he can see what we’re all about. Right? He can see what the hell is going on. And you can understand how he is not alone. Like we are also part of his tribe. We’ve been through what he’s been through, and maybe he hasn’t expressed that yet. But I’m sure he’s got some of the feelings that we’ve felt. And maybe, it’ll touch his heart. And that’s it all we want. And if it doesn’t, it’s okay as well.
Yeah it’s cool it’s for everyone, but like him, like, you know, he’s a young guy. You know, he’s, young. I’m probably the oldest one here. But like, you know, he had like the stroke effects on one side and he said he had to learn how to play guitar again, and, you know, all these things.
But I think also, a huge thing is, you know, I would like my girlfriend’s daughter to be an advocate for us and be like one of my or our top spokes people because, you know, I have a video clip I recently posted of her and she’s just such an amazing girl, what she went through and just so so young, and she just, she kicks ass, and she’s awesome.
Sadly, I know a couple of kids that are survivors. Jenna did go through the worst, the worst of it. But all the ones that went through it, had grueling surgery had to have after surgeries. They’ve had to learn how to rewalk learn how to walk again. I know one little boy who can’t speak. He learned how to walk again. And he can type in text. But when he goes to speak, it doesn’t come out.
Can you imagine, like, be a child, and you go from this normal, happy, bouncy, crazy kid. And then you wake up, and you can’t move. But you’re typing and you’re texting. And then you go to say words, and you hear what’s coming out like? And, that’s, I think, going to go, you know, be with them like that for a very, very long time. The brain heals, but it’s, it’s horrible.
Yeah. How many people have had a free screening so far?
So far, I think we’re at 60. So we’ve had 60. With the screenings, we’ve had two or three go for the MRI, a scan. So the numbers are kind of low. But I’ve only been part of the screening program, say, eight months. Seven months, and this was during COVID. So I don’t think it’s that bad during COVID. You know, and just getting it out on social media. That was it.
Did anyone find anything that they needed to address?
Nothing yet. Thank God, you know, they’re not the doctors cannot, you know, they can’t divulge anything, but most of the people that go for the screening will like reach back to me, a lot of them have a family history of this or aneurisms. I’ve had a couple of friends that have history of aneurism, which is so much more common.
But it’s only a matter of time. And once people get past, like, the, I guess, the fear of it, you know, they’re like, what are you more afraid of? Are you more afraid of being a parent in my shoes, or I’m giving you something that could prevent that. It’s not like, you know, you send your kid out on a bike.
And, God, my biggest fear is them getting hit by a car. You know, we put helmets on them, but here we have something that, you know, if we find it soon enough, you know, your child can hopefully live a beautiful long life.
Yeah. I had that conversation about prevention, for lots of things with people in my family, and so many of them would rather not know. I don’t know, I don’t get it.
I’ve had so many people say that. Like what do you mean you don’t want to know? Like, do you not go to the dentist, and they automatically give you an X ray and check for cavities? Do you not want your teeth in your mouth? You know, we have the breast cancer screening you don’t wanna go through cancer?
You know, if I have it, take it out, take them. And then it’s like, what I I don’t understand that, which, you know, and we do so many things like for our kids, you know, this all these things when they’re like first born, you know, all these tests and all these vaccines, like, we don’t even think about it. It’s like kid has to have this kid has to have this. If it becomes part of the new norm, why not?
And it doesn’t even have to be just AVMs. Like, I think it would be good for younger children to have an upper scan. Because I mean, look how many kids have the pediatric brain cancer. I know two moms that lost their children two, and then other kids that have it. And that is that’s just become like rampid and what are they all told? If we found it a little sooner, we probably could have treated it more effectively or more aggressively. It’s like, in this day and age, we shouldn’t have to hear that.
That’s interesting. That connection doesn’t happen. If we found that a little sooner… Well, why didn’t you find that a little sooner? What is preventing you from finding it a little sooner. Scans. Oh, there you go. So yeah, it’s such a strange and bizarre thing. And even me like Now that you say it’s so bizarre that that’s all we have to do is just scan people earlier. That’s it.
Yeah. And people like, Oh, I heard that you have to have dye injected into you. And you have to, like, if the doctor thinks that you do other than that, no.
You don’t even feel it anyway. Like, it doesn’t really even feel like anything.
Yeah, I’ve had it done. I had, you know, but for my own just MRA scan to check to see if I had an AVM you know, being that, you know, even though I lost a child to that, I don’t have any signs or symptoms that they say. So mine was just a straight up, scan. I think mine was like seven or 10 minutes long. And I’m like, oh okay, I’m good.
That’s it. What’s interesting is that my cousin who lives in Greece, she’s about the same age as me, somewhere mid 40s. Somewhere the late 40s. She had seizures. And what they found for her around the same time that it happened to me about 10 years ago, it’s almost 10 years for me is that she has an AVM in her head as well. She’s on my dad’s side.
Oh my god.
So this leads me to have you ever had the test for HHT?
No I don’t know what that is.
Hereditary Haemorrhagic Telangiectasia
Really? We have to do this. Oh my god. So I’m not even to try and say it. Some days. I can pronounce the whole thing, but I’m not going to try it. HHT. It’s like Hereditary Haemorrhagic Telangiectasia.
So it’s a rare bleeding disorder. It’s the only genetic type of a link to showing a family history of AVMs. Only disease so few people know that it, the neurosurgeon that did Paige’s surgery, you know, they didn’t even tell me about it, nobody, because it’s so uncommon.
How I found out when Paige died, a reader read her obituary, and sent me an anonymous letter telling me about this disease, and said it could have a link to Paige’s AVM. So I looked into it, and I was like, holy crap. So I started talking to people all over the world about it.
And almost every person I talked to with this disease, I asked them, anybody ever mentioned HHT, I would say the percentage is so low. And then the ones that did they were like, oh, immediately, we got tested and it turns out that my grandfather has it. So like, you and your husband, have a kid. And somebody on your side, you know, both sides, one can carry this gene, but it can skip generations.
But if you have this gene in your genetic makeup, someone in your family will develop an AVM. But knowing that you carry this gene, you would then know. Okay, you have to have your children, their children so forth scanned. So if you have this disease, this genetic carrier, the doctors that find it will tell you, there is a chance that you could have a child that has developed an AVM or they are children or their children or their children.
So that’s another huge battle to this disease that I’m trying to fight but because it’s a genetic piece, that’s crazy, because tests for that is a swab in your mouth. That’s it. So if you think of every parent that is either trying to conceive a child and going to the doctor’s for all this stuff, and you do all these tests, I mean, they have a test where you can actually remove the gene for autism.
Prior to having a child I have a friend that did it. Yes, you can choose to you have your child made in that little thing or whatever. And they like take out that genetic piece. And the baby grows and they’re born without that gene frickin insane.
Wow. So tell me about this. How do you say it again hereditary?
Hereditary Haemorrhagic Telangiectasia HHT. So now you’re going to start reading about this and you’re going to be like, Oh, my God. So HHT and the doctor that I do work with.
Google Do you think because I know what I’ve spelt there it didn’t find anything.
Oh my god, here we go. Bang hereditary hemorrhagic telangiectasia. Why don’t they just name it something simple. All right. So, guys, whoever’s listening, watching wants to know more about that, I will have links to some of this stuff on the show notes of the podcast, so that you guys can just look at it, and we can talk about it. I’m gonna get obsessed with it now. And I’m gonna start looking at it.
You’ll be like, Oh, my God. Oh, my God. I’m still obsessed with it. But it takes away from my other time because I have to pick battles to fight right now. But this is wild. This HHT thing.
The Emotional Toll
Okay, cool. I’m gonna look at it. So thank you for that. Now. Can we go back a little bit about I just want to touch base with family and see how you guys are all doing and how your husband is doing and how you guys are doing together? That would have been a really difficult thing. Nothing ever, you never get married expecting any of that stuff or planning for any of that stuff. How are you guys? How are you going? How’s things?
Very difficult. It’s almost like I can’t even explain it, it almost feels in a way. Like, we just live two separate lives, you know, we sleep in the same bed, we go through the motions. but it feels like we’re going through the motions of life, we’re going through the motions to raise our other two children to the very best of our abilities, without screwing them up with our sadness.
We try to laugh. And it’s not easy. It’s not we don’t blame each other for anything, because there’s nothing that we could have done. But it’s just, there’s such a sadness in our house. And it has just, rather than bringing us closer, it’s brought us apart. But we still come together, you know, when we have to but it’s been very, very difficult on us.
I think we’re just so broken. We’re so so broken. And we just focus so hard on not screwing our other two kids up. And he just throws himself into work. He worked so so hard. And if he’s not working, he’s very involved with my son’s baseball. And then that’s it. And he works out. And that’s his thing.
Yeah, he so we respect that about each other. You know, you do find yourself you drink more. You find vices. I would love to sit there and like just drink all the time or now I understand how and why. People do these drugs to numb their mind. I don’t do drugs or anything like that. I’m not an alcoholic. But I get it. I would love and my husband says the same thing. You would love nothing more than to be numb and not think.
And not feel.
Yeah, I just don’t want to.
So we don’t really talk about page that much together. It’s too hard for me. We do with the kids and my husband is very open with You know, he’s not afraid to cry. And he cries with them and me, I think I am just so on the defense, and I just, I’m such like a protector, you know, I just never, never let my guard down. I just never want to I can’t stand for my kids to see me upset.
Have you guys done the counseling being down that route managed to speak about?
I tried it. And I can’t say I failed because I never did it for more than two visits. I think he’s, doing some individually and counseling on his own. And I did try again to do some counseling on my own. But it just pissed me off because it made me upset. And I was like, I feel shittier than when I walked in. So I know, I don’t want to go anymore.
But you jumped on a podcast with me, and we’ve been speaking for an hour solid.
I know. But that felt good. But I can’t sit in a room and like. I don’t know.
Yeah, I love it. Okay, but I just wanted to throw that out there. Because the way you just said was weird. And I understand you because I completely understand you. And I’m not gonna judge you or any of that stuff. And you guys have your journey. That whole because part of what I do is I coach people, I coach people to overcome the challenges that stroke causes.
And most people think that what they’re being coached for, and overcoming is what the stroke did. And it’s a load of bullshit, what they’re overcoming is what they were before the stroke, difficult, you know, in connecting with people, arguing with people, stopping themselves from achieving their best off fears, anxieties, all this rubbish that we do in our lives.
And what happens is, stroke happens and then it gets amplified, all those things get amplified. But the problem is, it is now I’ve got an excuse I had a stroke. So I’ve got an excuse for all the reasons why I’m anxious, upset, emotional, why I won’t go there, why I won’t do this.
And what happens inevitably, with the guys that come on for a couple of sessions, and then don’t want to feel the feelings is those feelings will remain and they persist. And one of my amazing coaches and she probably got it from some amazing guru around the world, I don’t know where she said to me what you resist persists.
And it’s with you a longer and causes more trauma for a longer period of time down the track. And what she was encouraging me to do was go there, go where the pain was, and talk about the pain because once you’ve done that, and you’ve opened the door, and it releases, yeah, it’s a shitstorm at that time, but then later, once a shitstorm is gone, you can’t go back to that same painful place again, you kind of have dealt with that little bit of it, and it’s gone.
And one of the things that frustrates me dramatically, is, when I’ve been to counseling on my own, that frustrates the hell out of me, I would rather be in that room with the person that I love that I’m married to that I’ve had children with that says to me, that says to me, all the things that I can say all the things that I want to say from no judgment or anything just I’m being a human, I’m just interacting, I’m just talking.
And then what the miracle that happens is that perhaps in my mind, the miracle that happens is she goes somewhere where she has resisted to go from 50 years, and it releases something and then we can move on, we can let that one go. And then we can move on. And once you get good at going there where it’s hard and releasing it, you get better and better at it.
And it feels better and better. And the other side is much nicer. And the trauma that you experienced stays in the past, and you’re not reliving it in the future. All you’re doing is remembering it for what it was. you’re addressing it for what it was. And then you’re moving on with it. It doesn’t change the way that you love your daughter. It doesn’t change the way that you interact with your children now, it doesn’t change anything about anything.
It just takes it out of that place where you’ve locked it away. That it reminds you from time to time that it’s still there and it just releases it and it just sets it free and along it along with that it sets you free. So this is the beautiful thing about podcasts is I get to interfere in people’s lives in this beautiful way by ringing them or sending them a message or a podcast interview or request or whatever and going come on my podcast complete strangers like you come on my Podcast, they bear this soul.
And I cannot understand how then that complete stranger who bares their soul some of them have said to me, I’m the first person in 10 years that they have spoken to about their stroke. And then that person won’t go to counseling. And it’s like, Guys, this is what we’re doing. This is a counseling session, you just haven’t worked it out sucked you in. And what we’re doing is at the same time, we’re creating the counseling session goes out there to all the 4000 people a month, who download this podcast.
Yeah, I almost feel vulnerable. In a sense when I have done counseling, I feel like because then I walk back in. I’m like, they know my weakness. They saw me weak. And then it bothers me, and then I get uncomfortable, or I get uncomfortable. That I cried. I think that’s a big problem for me, too. I don’t know why I’m very uncomfortable crying in front of people.
Remember all those rules that you just relaxed after you lost your daughter?
This is one of them. Just let it go.
And I say it all the time. I’m the biggest one. Let it go. Let it go. But I would explode. That’s probably why I have so many stomach problems. Because I’m exploding inside.
Yeah. I get it.
I kill myself.
Yeah, I’m so glad I’m so privileged to have you. Let me tell you these things. And you’re understanding where I’m coming from, I am so grateful that you let me do that. And that that’s kind of a little gift that I give you some people don’t take it as a gift. Some people get really shitty, that I give them my opinion and my thoughts.
And I love you for listening and copping it on the chin and not hating me forever about it. But some people need to just hear it. And that’s I’m grateful that you let me and I’m going to leave it there. And I’m going to let you go down your own path. I don’t begin to know the first thing about anything. I don’t believe that I know the first thing about anything, especially in this situation, I’ve got no idea.
I don’t want to ever know what you feel and what you really are going through because no parent does. No human does. And it’s unfortunate that there’s some people that do and you guys are my heroes. That’s why I reached out because I needed to make sure that I did my bit and make something good out of the shit that I’ve been through to help you make something good out of the shit that you’re been through.
And together, maybe we can make a difference. And maybe we can change things. Or maybe we can fix things and overcome things. And I know we’re not going to fix everything and change everything and solve all the problems. But if we just make one person’s life a little bit different, it’ll all have been worth it.
Yeah, that’s what it’s all about. Just start with one. Just one.
Yep. And then we’ll take any others as a bonus after that.
Yes. Yes. Complete.
So how are you raising money? What are other things that you do to raise money? How can people support your cause?
Well, we we have our website, which is thepaigekeelyfoundation.com We have a donation link right on there. And during COVID we were very restricted to what you know, any outside fundraising events, etc. But we were able to do a couple and I live in a wonderful community that still treats it like it was yesterday.
The businesses, the customers 1000s of dollars are donated constantly just by we have bracelets that we do for the foundation that local shops carry. We have these like signature stickers that go in storefront windows, and then that just turns into a fundraiser that they’ll do and we have a baseball tournament that I’m so excited we finally got to do and we’ve got some incredible sponsors, companies that donated hundreds of dollars worth of products that get raffled and that goes right to the foundation.
We recently were awarded our first grant, which is going to be between $1000 to $2,000 and this was all done social media. It was a Facebook group 100 women who care and The girlfriends that work with me is that you got to join this group. And it’s great. It’s men and women that get together that run foundations. And every quarter, we donate 100 bucks.
And then we nominate a foundation. And it’s just it’s a win win. I’ve done online fundraisers on Facebook, where I’ll raffle something off, you know, like something really cool. And you get like, hundreds of dollars. Just from the other things that we do. I have car dealerships that help. It’s really through the sponsorships.
And I gotta tell you, the community, the town that I live in, it’s, I still don’t believe, I don’t know where the people come from. But they just treat it like it happened yesterday. And they’re like, yeah, we’ll do a fundraiser. Of course we will. And it just trickles to where we’re under a year. No, no, what am I saying? We just had our year anniversary. And we are just under 50,000 that we’ve raised.
And I haven’t had like anything big yet.
I think that’s huge. That’s a lot of money like a lot.
That’s a lot of money.
And it’s just, I’m collecting and collecting. Because I’m dreaming of opening that center. And if I am able to save up, or get enough money and funding for our machine, I just need one. The doctor that I work with, it will open the door to you come in for a screening, Hey, would you like to scan because I own the machine and nobody can tell me no.
That’s what it’s gonna do. And nobody can tell us no. And I would like to open it to the community where maybe we could do, you know, 50, free scans a month, maybe we’ll do 100, maybe we’ll offer it to this school, everybody in this school who took part in our program, your family comes in on such and such a day. And just doing that. That’s it, that’s where it’s going.
How much does the machine cost me.
I heard that they can go anywhere from like 100 to 500,000. to millions. There are companies that donate them. I just haven’t gotten that far to like, do the research, you can get like grants, but there are like medical supply companies that actually give them to foundations, as long as you have the place to house the machine, which we do.
It’s just because of COVID, I haven’t been able to do that. But now the COVID is kind of lifting a bit here in the States. We have a gala that we’re planning in October, you know one of those like big Fufu, which I’m very nervous about. But we’re expecting to invite a lot of people that can help us and it’s really going to get the word out. And hopefully open a lot of doors for us, the doctor will be there. We’re expecting some some really great things.
So brilliant. That is such an amazing thing. 50 grand in a year. So at this rate with no effort of increasing it or doing anything in 10 years, you’ll have raised half a million dollars. That will be amazing. But of course it sounds like it’s going to go way beyond that, and that’s great.
So all you need is a room, you’ve got the room and now all you need is a machine and then you can just get people in and you can get doctors to volunteer and donate their time. And radiographers, etc, they’ll be definitely people that will be up to doing that. And you could screen as many people as you want, whenever you want, and it can cost nothing and that’s all you need. And then the people that could offer a little donation, they believe 10 bucks or 20 bucks and they can help.
Yeah. And even you know, if we have to, we have to increase like, staff I’m just saying you know, hypothetically staffing or something like that, you know, all right, we have a Mrs. For 50 bucks for 100 bucks for 200 something like that, you know, but it just opens the door to so so many things and it’s possible.
Anything’s possible that people
Can’t go back in time yet.
That I know of. But this is possible.
I wish you could That would be a really good reason to go back in time.
Wow, man, this is such a heavy podcast. I didn’t want it to be heavy. But I knew it would be so I just accepted the fact. Look, I’m really grateful that you are on the podcast I really appreciate it. I wish we never met. And this never happened. And I wish you well, and I wish your family well, your children and your husband, and I wish you guys healing and growth and all the things that you guys need to move on and expand.
And remember Paige, who was perfect in every way like your other children. I wish them well. So what I’m gonna do is I’m going to get off this podcast in a little while in a second, I’m going to go to the donate page and then donate 100 bucks. And anyone listening hopefully it converts Aussie to US, I want to donate 100 US dollars.
So hopefully people listening can go and donate some money 10 bucks a buck, five bucks, 50 cents, whatever they want doesn’t matter. Just please, that is the call to action for this podcast episode is listen, learn, and then go ahead and donate and support this amazing cause.
And I feel like what you and I need to do is we need to combine because I really want to be behind raising awareness for you on Instagram. So if maybe we can get together and do a maybe every two months, catch up or every two months, Instagram, Instagram, video or do like we’re raising money or awareness for this thing. You know, maybe we can, every couple of months do something so that we can continue some momentum and bring followers to your page.
So the website is thepaigekeelyfoundation.com. And the Instagram is also paigekeelyfoundation. And I’ve got 4000 followers and I’m no one special. So what we want to do is we want to increase your 1158 followers right now 200,000 followers worldwide. So go ahead and follow the page, paigekeelyfoundation. Go ahead and make a small donation. And reach out and send Gina a message and let her know that you’re there. How’s that sound?
It sounds amazing. And it was such a pleasure to speak to you. Again, I’m sorry that we did meet. But we met and here we are across the world. And we found each other. So we’re not such needles in the haystack. And joining forces to make change. No matter where you are. You don’t have to be in you know around the block.
No, you can be on the other side right at the bottom of the planet. And that’s where I am.
We’re all people breathing the same air just at a different time.
Thank you very much for being my guest. I really appreciate it.
Thank you and bless you and your family and have a wonderful, wonderful day.
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