Jason’s Story – Twin Cities Heart Ball 2019

Jason’s Story – Twin Cities Heart Ball 2019

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(piano chord) – Most of the medical staff that I talked to throughout my procedure and through my recovery asked me one question,
“How did you find it?” And they asked me because most of the time they only find it in autopsy. (solemn music) ♪ You know ♪ ♪ It won’t hide ♪ ♪ The unbroken promise of love ♪ (solemn music) I wasn’t with dad when he had his stroke. He was up north and on a Sunday night he complained about a
headache and felt dizzy. So he laid down on the bed
and became unresponsive. My stepmother called the ambulance. (solemn music) He was able to blink his eyes but he wasn’t able to move them. He wasn’t able to move
any part of his body and he chose to go a palliative route. And I watched dad pass. (solemn music) Dad was 67 years old. He never got to retire. He never got to see his grandson
graduate from high school. (solemn music) When I started to get the headaches I immediately thought of dad and I thought of what that
would mean for our family. And that’s what lead to the CT
scan that found my aneurism. (solemn music) – When he got the news
and came home and told me, I think he was shocked. The fear of it rupturing was real and not being able to
do the things together that we’ve always dreamt about doing, and growing old together. – At one point I asked my doctor if I was going home that day because she was so concerned
about a rupture happening. (solemn music) – He was hooked up to
all kinds of machines. His color wasn’t right but
he looked great in my book ’cause he was there, he was
alive and he came through it. I always knew Jason was really strong but you don’t realize
how strong a person is, until they go through
what he went through. (solemn music) – The Heart Walk has a
different meaning now than it did before. Being able to walk into that survivor area and feel the love in that room, it was a milestone, a moment to celebrate. To feel as healthy as
I do now is a miracle. In a follow up appointment I talked to my doctor
about the genetic testing. In part because I wanted
to support the research. So the genetic testing revealed that I have what’s known
as Loeys-Dietz Syndrome. (solemn music) – That’s a disorder that can manifest in multiple different ways. We know that patients with
this Loeys-Dietz Syndrome are predisposed to aneurisms. Knowing exactly what genetic
disorder a person has helps us then to guide them
with regard to family screening. – My brother and my son have had CT scans to assess their vascular structures to make sure that they
don’t have a similar type of aneurism. (solemn music) – You know, we caught it early enough, but that was totally out
of left field for me. Had I not known about this,
had I not taken that surgery, I may have had an incident down the road that may have been catastrophic
for those around me. – It’s easy to take for granted how much research has happened. The procedure that I had
is less than 25 years old. That’s why I donate to the
American Heart Association, to support the continuing research. The reality is that these
diseases are so poorly understood and so I think that’s
where the genetic testing and participating in the genetic research can help in the future. If we can’t figure out how to find these risk
factors earlier for people, than the tragedies will continue. The greatest fear I have going forward with Jason’s condition, is the unknown. With all the research that’s been done, there’s still a lot that we don’t know. (solemn music) – I think the biggest fear I have is that I could have
a stroke like dad had. My biggest hope’s, I’d like
to see Jacob get married. I’d like to retire and
enjoy time with my wife. I think going through
this whole experience, you can look at an aneurism as a curse. I look at finding the
aneurism as a gift from dad. Finding the aneurism for
me, and for my brother, were the last two gifts we got from dad. And I think him every day. (solemn music) ♪ My life ♪ ♪ It grows ♪ ♪ Inside ♪ ♪ It shows a promise of mine ♪ ♪ You know ♪ ♪ It won’t hide ♪ ♪ The unbroken promise of love ♪ (humming)

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