Meet Patrick: 2020 Family Advocacy Week Champion
Patrick is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Patrick and his family will share information about his health journey, Yale New Haven Children’s Hospital’s role in providing Patrick with necessary health care services, and why the public and our elected officials must invest in the future of kids like Patrick.
Patrick was diagnosed with infantile spasms when he was 4 months old, a seizure disorder where the spasm or seizure causes the muscles in the arms and legs to stiffen and bend the baby's head forward. These infantile spasms can also cause delayed development.
Doctors at Yale New Haven Children’s Hospital in New Haven, Connecticut, ran several tests to determine the severity of Patrick’s condition, and learned it was not going to be an easy road for Patrick.
At 9 months old, his seizures increased and, in turn, delayed his development.
After receiving physical and occupational therapy for the first few years of his life, he had left brain resection at 3 years old. Then at 6, Patrick had a left functional hemispherectomy, where one side of the brain is surgically disconnected from the rest of the brain so that seizures originating in that hemisphere have nowhere to go.
Since the hemispherectomy, Patrick is seizure free. He continues to see multiple specialists as well as occupational, physical and speech therapists.
“This is an ongoing journey,” says Mary, his mother. “It doesn't stop. Sometimes it pauses, but at any time it can pick up again. Continuity of care is very important.”
Today, Patrick is stable and doing well. At 22, he strives to be as independent as possible. While he has intellectual and physical disabilities, Patrick loves to engage with others, smile and riding rollercoasters.