Rare diseases need treatment, too ...Middle East

Barth syndrome is a diagnosis from which it is often impossible to recover. Heart failure can claim lives in an instant as cardiomyopathy progresses undetected, like it did for my baby, Declan. At 11 months old, he unexpectedly went into acute heart failure and was hospitalized. He was put on machines with unfamiliar acronyms, like ECMO and VAD, to keep him alive. I, along with Declan’s father and my partner, were told his only hope would be a heart transplant. What we experienced as a family was nothing short of a living nightmare, but the reality is that the past year could have been much worse for us. Declan is still here today because of a series of miracles. Our first

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Rare diseases need treatment, too ...Middle East

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