A miracle

i was born on Good Friday in April of 2000, 1 month early with a very low heart not being able to process a large amount of amniotic fluid.  I remained in the NICU for a little over 3 months.  My mutation number is 20/27.  I have multiple diagnosis to include:  congenital central Hypoventilation syndrome (CCHS), Hirschsprungs and Crohn's disease, Autism, ehlers danios syndrome, hypoglycemia, epileptic seizures, bronchectasis.  I am 24 hour ventilator dependent with oxygen and a  feeding tube as well having no large intestine and part of my small.  I love technology and spend slot of time on the Internet using my iPad, I love music, school and movies.

World map of Congenital Central Hypoventilation Syndrome

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