Meet the Lux Family


In Spring of 2017 Jennifere and Mike found out that their son Tristan’s heart has a dilated aortic root with mitral valve leakage. Looking at other symptoms, Tristan’s cardiologist suggested having him see a Geneticist and 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.

In August, Genetic testing revealed that Tristan was in fact diagnosed with Marfan Syndrome. Other than his current heart issue, Marfan Syndrome can have multiple other effects on the bodies heart, blood vessels, bones, joints, eyes, and lungs. This is an extremely recent diagnosis and no one really knows what the 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 of having an aortic dissection.

They are still learning about Marfan Syndrome every day, and because it is rare, it’s been a bit of a challenge. As Tristan becomes older, Tristan will have a significantly increased chance of being affected by Scoliosis, eye issues, lung issues and continued heart issues. Consistent monitoring with all of
Tristan’s doctors will now be the norm to make sure he stays healthy. Mike and Jen worry on a daily basis for what the future hold for Tristan. 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!