Skip to main content


Wyatt was born unexpectedly at 26 weeks gestation. He had a prolonged NICU stay and came home with no bonus items and was thriving. At 7 months old he began declining and stopped eating orally. He was found to have pontocerebellar hypoplasia and does not have any specific type associated with his degenerative disease. He had a whole exome sequencing done and they found gains of function and losses of function on the gene CCDC88C… 1 of 5 and 1 of 25 known in the world. He now has a feeding tube, hearing aids, oxygen, suction, pulse oximetry, 9 specialists, 4 therapists and is thriving in his own way.