Meet Julie Y, Parent Mentor at Akron Children's
Julie`'s Story
Isabella was born with a rare genetic disorder called GM3 Synthase Deficiency. She is completely dependent on IV nutrition (TPN), and also has a GJ tube which we use for venting and to give medications. She has also been diagnosed with epilepsy, low muscle tone, scoliosis, and is globally delayed. She is the strongest, toughest person I know! She uses a communication device (AAC) to communicate and it's been amazing to see her spunky personality come alive in the things that she says with her device. Isabella started with 8 words and now has thousands of words that she can access with her device. Isabella has been seen by many different specialists/departments at Akron Children's and we are so grateful for the care they provide!
Julie` is a parent mentor for these conditions: Cortical vision impairment, Epilepsy, Feeding Disorders, Hypotonia, Scoliosis.
Julie` is a mentor for these care services: Endocrine, Eye, Palliative Care
