Baby Nylah

Hi my name is Nylah Amina, I was born April 6th 2015. I have been diagnosed with a rare genetic condition called Ondine's Curse (central hypoventilation). Basically my brain forgets to tell my body to breathe, but only while I am sleeping, and there is no cure. I will have to be on breathing machine through a tracheotomy for my whole life . However there is an alternative solution that would allow me to have a "normal" life and that would be  to recieve a Phrenic Nerve Implant. This will act as a pacemaker for my lungs and is completely internal. Christopher Reeves was the 2nd person to ever get one. However this implant is expensive. I don't know how to count yet, but ... its gonna be a lot. Please help my parents out because I can't get a job yet. 

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