An East Islip High School freshman with a rare mobility disorder recently led a schoolwide awareness day to educate classmates about his diseases and others.
Kyle Engblom, 15, has Fatty Acid Hydroxylase-associated Neurodegeneration, a progressive disorder of the nervous system that leads to problems with movement and vision. Because of the rarity of the disease, Engblom was not diagnosed until the end of sixth grade, though he showed symptoms as early as his third birthday.
In the interest of spreading awareness, Engblom last year approached officials at the high school about starting a Rare Disease Day. The day of advocacy, meant to raise awareness of rare diseases and help those who suffer from them get access to medical treatment, is observed in countries around the world each year on the last day of February.
"Kyle has a really good spirit and doesn't let anything get him down in life," said his mother, Gina Engblom. "What keeps him strong is his peers at school -- they've been very accepting."
To mark the day, East Islip students and staff wore white clothing to show support, and Engblom handed out white ribbons in the hallways between classes. In addition, Student Council members made T-shirts that featured Engblom's name and the Rare Disease Day logo.
"It was amazing to see how many of our students and staff participated," said Jessica Pignataro, his guidance counselor.