One Family’s Hope for Children with Leukodystropy

When 14-year-old Jill Triptow was a toddler, she reached the typical developmental milestones with ease. “While her two front teeth came in after the other teeth,” recalls Jill’s mom, Debbie, “we didn’t think much of it, other than that it was endearing.” By the third grade however, Jill began losing her balance and experiencing other neurological symptoms. Alarmed, Jill’s parents embarked upon a diagnostic odyssey, seeing multiple doctors, trying numerous medications, and doing all that they could to try and understand what was happening to their child.

“It was a terrible guessing game,” says Jill’s father, Kurt. “We were desperate for an answer, and our neurologist ordered an MRI for Jill, which revealed that she had degeneration of the white matter in the brain.”

Doctors diagnosed Jill with 4H Syndrome, a rare, life-limiting leukodystrophy that is characterized by a lack of myelin, the substance that protects nerve cells in the brain and in the spinal cord. Many children with 4H Syndrome lose the ability to walk, experience involuntary muscle contraction, and have poor fine movement skills. In addition, they often face problems with eye movement and trouble with speech.

The Triptow family was determined to raise awareness about their daughter’s rare genetic disease. Together, with friends and family at their side, they organized the Hope 4H Syndrome Golf Tournament in Brunswick, Ohio, and raised $15,000 for Children’s National to support research that may someday result in a cure.

Despite her condition, Jill continues to participate in the activities she loves, including school, hanging out with her sister, Lynn, and playing with their family dog, Buddy. She is involved in the Sparkle Cheerleading Squad, a group of girls with special needs who are mentored by the high school's varsity cheerleading squad. The songs Jill and her fellow cheerleaders sing are songs of resilience.

“We try to live each day with a positive attitude,” says Kurt, as he stares at his daughter who sits smiling in her wheelchair. “By donating this money we are raising awareness and giving children like our daughter hope for the future.”