In Spring of 2017 we found out that our son Tristan’s heart has a dilated aortic root with leakage. Looking at other symptoms, Tristan’s cardiologist suggested having him tested for Marfan Syndrome, a rare genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. Tristan was diagnosed in August 2017 with Marfan Syndrome. Other than his current heart problem, Marfan Syndrome has multiple other effects on the bodies heart, blood vessels, bones, joints, eyes, and lungs. This is an extremely recent diagnosis and we do not know what th future may hold for Tristan.
Tristan (a huge sports fan at the young age of 7) went from playing football, baseball, and basketball to now being unable to participate in sports because if he gets hit the “wrong way” there could be some serious or event deadly consequences. He is also very limited to what he can do in gym and recess for fear his heart could potentially burst.
We’re still learning about Marfan Syndrome every day and because it is rare, it’s been a bit of a challenge. We know that as Tristan becomes older, he will have a significantly increased chance of being affected by Scoliosis, eye issues, lung issues and continued heart issues. Mike and I worry on a daily basis for what the future hold for our son. And to be able to eliminate some of the financial burden would help.
We can’t wait to start raising money for such a deserving family!