Having a child diagnosed with epilepsy can devastate a family. For Heather Plotkin ’00, her son’s experience with the disease was an inspiration to help others. She and her husband, Erik, created the nonprofit Tyler Foundation — named for their son — to support other families coping with the condition.
When Tyler was born in July 2004, the Plotkins had little inkling what lay ahead: Their newborn appeared to be in perfect health. But within weeks, their baby began experiencing seizures, which quickly progressed in severity, frequency and duration. Doctors at Children’s Hospital Boston confirmed the diagnosis.
Tyler started a regimen of prescribed medications, but to little effect. An attempt to address the problem through diet also failed. The seizures kept coming, sometimes more than 20 in one day.
Doctors presented a drastic last resort: Remove the entire right half of Tyler’s brain.
“We were terrified at first,” Plotkin says of the procedure, known as an anatomical right hemispherectomy.
Extensive research offered reassurance that surgery was the right choice. Tyler underwent the procedure in October 2005, at 15 months old. He experienced some initial complications — swelling on the brain was among the most serious — but thus far hasn’t had a single seizure since the operation.
With Tyler’s prognosis improving, the Plotkins turned their attention outward.
“We were lucky to live close to the hospital and to have family and friends nearby for support,” says Plotkin, who is also mom to 2-year-old Alisa. “Many other families we met didn’t have those luxuries.”
They established the Tyler Foundation in 2006, to provide emotional and financial support for families of children with epilepsy at Children’s Hospital Boston and UMass Medical Center. Events such as a yearly dinner and silent auction generate the funds, which help to cover heating bills, therapeutic services, and similar expenses.
Recent moves include establishing partnerships with two philanthropic web sites — GoodSearch.com and GoodShop.com — which donate money to nonprofits for searches and purchases made through their sites. An additional affiliation with Shoebuy.com earns price and shipping discounts for those who shop through a link on the Tyler Foundation web site, while also raising funds for the organization. So far, the foundation is thriving — as is its namesake.
“Tyler is doing remarkably well after having more than 20 surgeries,” notes Plotkin, who hopes to expand the number of hospitals the foundation serves. “He’s in pre-kindergarten and undergoing numerous therapies each day to help regain the skills he needs. He’s one tough cookie.”