Chance Y.
Kentucky
Birth Date: September 26, 2003
Diagnosis: ROHHAD Syndrome
Theme: RED
(Favorites - Policemen, Firemen, Maps, Hot Wheels, Playing Cards)
Due Date: September 1, 2020
Chance's Story
Chance was born at 37 weeks. He was in respiratory distress and taken immediately to the NICU in Jacksonville, Florida. Over the next 30 days he was diagnosed with several rare birth anomalies ... Agenesis of the corpus callosum, panhypopituitarism, optic nerve hypoplasia, and hypotonia among others.
His early days consisted of blood work, therapy, doctors visits, and multiple types of radiology scans. And on my end research! Lots and lots of research! Over the first 5 years of his life he would be diagnosed with cerebral palsy, adrenal insufficiency, and growth hormone deficiency. Between 2 1/2 and 3 years of age, he nearly doubled his weight and no one knew why.
In 2009 Chance started having tachycardia and breathing issues that lead to the ROHHAD diagnosis. He has overcome so very many obstacles. He has Autism and has completed speech and occupational therapies. His health has declined since July 2019. He is now home schooled and under hospice care.
