Meet Harrison: 2022 Family Advocacy Day Champion

Harrison is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Harrison and his family will discuss his health journey, Gillette Children's Specialty Healthcare’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Harrison.

Harrison was born with hypoxic ischemic encephalopathy, a type of brain dysfunction that occurs when the brain doesn’t receive enough oxygen or blood flow for a period of time. Then, when he was 2 years old, he was diagnosed with quadriplegic cerebral palsy. Harrison also has dystonia – a movement disorder where his muscles contract involuntarily.

“We knew Harrison would have special needs after his birth,” says Megan, Harrison’s mother. “So then, when he was diagnosed later, we were somewhat prepared. 

Harrison receives physical therapy, occupational therapy, and speech therapy regularly. He also receives Botox injections every three months and phenol injections every six months to help with spasticity and pain from dystonia. He will have surgery in October 2022 for deep brain stimulation. 

“Our number one worry was how we were going to be able to afford to give Harrison the medical care and equipment he would need,” says Megan. “We immediately started to look for a new home we could retrofit so that he could have an accessible home to grow in.” 

The COVID-19 pandemic greatly affected Harrison's access to therapies and caused setbacks for much needed treatment. It also pushed back the family’s timeline for ordering his power wheelchair and the custom seating.

“Our family has had to learn to adapt so that Harrison is able to do all of the things that we like to do as a family,” says Megan. 

Harrison is now 6 years old and doing fairly well, however he has experienced some significant pain in his hands this past year. 

“We have been working closely with his specialists to help manage this pain,” says Megan. 

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published this page in Blog 2022-06-06 13:32:37 -0400