WHITEHOUSE, Texas — A Whitehouse ISD student with a rare disease is making headlines in part to her fight with Marfan syndrome, and her love for Rice University baseball.
"The night we actually saw them play against Sam Houston was the best night. Because it was our first moment when we really didn’t have to think about what all had happened. We didn’t think about my vitals, we didn’t think about… you know do I have a weird rhythm?," Jaelyn Kirby said.
Jaelyn Kirby is a Whitehouse High School student, a baseball enthusiast, and a patient at the Texas Children’s in Houston where she’s treated for Marfan’s syndrome.
Her family is familiar with the disease – Jaelyn’s mother lives with it, and her grandmother passed away from it. Marfan’s affects the body’s connective tissue which can lead to a number of complications, including in the heart.
"Lucky in some senses that she doesn’t have much in the sense of aneurysms, she’s much more mild than the vast majority of kids her age. Which is great, but unfortunately she’s been infected with arrhythmia which is pretty uncommon. We certainly know what happens, but it’s an uncommon complication of Marfan’s syndrome, but that’s been kind of a trial this year, getting her arrhythmias under control," Texas Children's medical director of cardiovascular genetics Shaine Morris said.
Growing up with Marfan syndrome is not easy, but for Jaelyn's mom, Nadia Allmon, it’s been incredibly rewarding seeing all the support that Jaelyn has received along her journey.
"When I was Jaelyn’s age, I did not have the community like this that she has. And so she has the social media, she has the Marfan Foundation, I didn’t have that I felt very alone. But now because of the research, because of people who care, because of donating to Marfan Foundation, we’re at this place where kids with Marfan’s can grow up and live long healthy lives," Allmon said.
This weekend Jaelyn plans to continue raising awareness and gaining support. On Saturday she’s participating in the Walk for Victory for Marfan’s Foundation. Right after that – having met most of the team, she’s throwing the first pitch at Rice’s game against Stanford.
"Uhm… I’m like 75% confident I’ll throw a strike," Kirby said.