For the first few months of her life Avery was hitting all of her milestones. When she was 6-months-old she suffered a seizure and her parents took her to the emergency room. It was there that her family learned she has Polymicrogyria, a malformation of her right brain that had happened in utero. At 9-months-old she lost neck control and Avery’s seizures increased. She and her family were in and out of the hospital. Avery had to be induced into a coma to stop the seizures and spent a total of 79 nights in the hospital. After searching for more answers, Avery was diagnosed with Alternating Hemiplegia of Childhood, a variance in her ATP1A3 gene meaning portions of her body are paralyzed at a time. This happens almost daily, sometimes for seconds or even days at a time. Avery is the only recorded case to have these two unrelated issues.
Avery has been doing both Physical and Occupational Therapy at the Glenrose over the last few years, moving from mat play to power mobility. The team at the Glenrose wanted to help Avery continue her progress and allow her to have the ability to move. They decided to try using power mobility with Avery, which is uncommon given her young age. Avery’s joy was evident; she was laughing, smiling and socializing with others. Her interactions with others were noticeably different than when doing other activities.
The relationship Avery has built with her team at the Glenrose is remarkable, highlighting the inspiring work that patients and staff do each day. Avery’s mother, Bridget had this to say, “The Glenrose hasn’t just taken care of Avery, they have taken care of our whole family. The staff never hesitate to jump in and help with her siblings or lend me a hand.”
Advances in technology, such as power mobility for kids like Avery, are possible because of the community of support for the Glenrose Foundation.
