Barth Syndrome Foundation Awareness Video 2013

[@callistanewman3482]

My boyfriend has Barth Syndrome, and he almost died when we got together. He was very close to being put on a transplant list and if he didnt get better he was going to die. I told him no matter what happens I will always be there to support him. Its been over a year since then and hes the healthiest hes ever been! Hes 22 but us being together gives him a reason to keep on living. Our only fear is having a daughter later on and passing it down to our possible grand children. Videos like this help me so much to understand what exactly he goes through.

[@callumjames84]

Callista Newman ❤️

[@TheKatarinaGiselle]

It's been 8 years..how is he? Is he still alive? I hope he is and that you are both well.

[@furbabiesarefamilytoo]

Does everyone with Barth Syndrome have enlarged ears?

[@TheKatarinaGiselle]

Ears never stop growing in all humans. The ears aren't enlarged though, the rest of them is just small because the mitochondria in the cell doesn't work properly and it affects every muscle in the body, especially the biggest muscle the heart, which is usually how they die. Because their hearts are so small and every cell in the body is so exhausted. Like a random arythmia for example that could come out of nowhere can kill them. This lowers their life expectancy by a lot.

[@jjpetroleum31]

@@TheKatarinaGiselle actually, they tend to have weak, enlarged hearts- dilated cardiomyopathy

[@dillon4349]

I have barth syndrome

[@elijahmurray6094]

Hugs