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Meet Wendy G., Parent Mentor at Akron Children's

Wendy's Story

My name is Wendy. I am married to a wonderful guy and we have three kids, two of whom use Akron Children's’s services on a weekly basis.

My oldest child had virtually no medical concerns until he turned 14. He was diagnosed with juvenile idiopathic arthritis. He also had occasional seizures that were diagnosed as epilepsy. In addition, he developed chronic migraines and scary hemiplegic migraines. Through all of this, he managed to graduate from high school and earn his Eagle Scout award.

Elly, my youngest child, arrived after a fairly uneventful pregnancy, and was almost immediately diagnosed with a cleft of the soft palate. We used special bottles and spent hours feeding our lethargic child each day. 

At one month old, she was hospitalized with RSV after she stopped breathing in Children's Emergency Room. We spent a month in the PICU. During that time, tons of medical folks descended on us.  After many tests, we received the news that this beautiful baby had a chromosomal deletion on the long arm of Chromosome 2,  through the telomeres.  At that time, we were told there were less than 100 people worldwide that had the same diagnosis.

Since then, she has been trached, had a g-tube and mickey button installed, and outgrown the need for a feeding tube.

She has received speech, OT, PT and music and art therapy from Children's.  She has been evaluated by a neuropsychologist to help inform our educational decisions.

We do not have home nursing, and have learned how to effectively navigate the world of extreme medical needs with humor and tantrums. It's been helpful to find a group of parents who at least understand the depth and breadth of our journey, if not the exact details of every diagnosis.

As of now, Elly is unique in the world with her more refined genetic testing revealing that she also has a duplication on 2q37 to  go along with her deletion of 2q37. She is being followed for suspected mitochondrial involvement.

Wendy is a mentor for these care services: Asthma, Allergy, Developmental Delay, Ear Nose Throat (ENT), Endocrine, Eye, Feeding and Nutrition, Gastroenterology, Genetic Syndromes, Neurology, Orthopedics, Palliative Care

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