Your Patient Hero for the Children's Fund
“Isabel is an incredible source of inspiration in my life,” Isabel’s brother, Robert explains. “She goes through a half-dozen therapy sessions a week and is in a special needs program at school, but she doesn’t let that faze her and still finds a way to be happy and enjoy the opportunities she has.”
At 8 months old, neurologists at Packard Children’s diagnosed Isabel with a rare form of epilepsy called Infantile Spasms (IS). The seizure disorder primarily affects babies within their first year of life and is diagnosed in about 2,500 children throughout the US each year.
While there are medications to help with the spasms, children with IS often also face developmental disabilities and autism. For Isabel, our hospital has provided care spanning a number of areas beyond neurology, including audiology, ophthalmology, genetics, gynecology, and gastroenterology.
Additionally, Isabel receives physical, occupational, and speech therapy each week.
“Isabel has grown so much,” says Robert. “When she was much younger, she had trouble speaking, and most of the time only my parents and I could understand her. She has spent hours upon hours in speech therapy for years, and now the difference is unbelievable. Everyone can understand her, and she is now working on speaking in complete thoughts, which would have been impossible when she began.”
But Isabel’s absolute favorite therapy? Music therapy. She spends at least four hours each month exploring musical instruments and expressing herself through songs and sounds.
“Packard Children’s has done so much for my sister, and we have relied on the hospital for her care for her entire life,” Robert adds. “To me, it was a clear decision to not only give back to Packard Children’s, but to help establish a music therapy program that would make a difference for children in need, like my sister.”
Robert has fundraised through Summer Scamper and other activities to help support and expand music therapy at the hospital. This year, Robert was not only a top race finisher at Scamper, but also a top fundraiser, collecting more than $5,600 for the hospital.
“To the patients at Packard Children’s: I’ve seen how tough it is to fight a condition, and I’ve seen all the struggles Isabel has gone through over the years,” Robert says. “I have nothing but the utmost respect and love for you, and I believe in you.”
“To the families of patients,” he adds, “I know firsthand that it’s incredibly hard to watch a loved one go through problems. But your support and love makes all the difference. Thank you for everything you do!”
Isabel is #WhyWeScamper.
Register to Scamper and support care, comfort, and cure for more kids like Isabel.