To raise awareness for rare diseases, Carter’s Challenge, along with several other nonprofits, hosted an inclusive play area for children of all abilities to celebrate what makes them different.
Families celebrated Rare Disease Day early on Friday with an inclusive play day at Scooter’s Jungle. Rare Disease Day falls on the last day of February each year.
“I want to invite special needs families to actually collaborate on cures,” said Christopher Velona, founder of Project Sebastian, which raises awareness and funds for Batten disease. “I want to make sure that as parents we stand up for the advocates of our own children and all children.”
With admission, children had two hours of playtime in one of the three available playrooms.
“(Today is) a day away from the hospital and away from the needles,” said Lety Garcia, patient family liaison for the Michael Hoefflin Foundation, which provides support services for families with childhood cancer. “A day where they can have fun.”
Creating a space where parents can safely discuss their challenges and share resources was one of the main goals of the event, according to Velona.
Carter’s Challenge is named after Jennifer Sarkar’s son, who suffers from Sanfilippo syndrome, a child’s version of Alzheimer’s. Though there is no cure for the disease, Sarkar has hope.
She organized the event to not only continue her goal for raising awareness for her son’s disease, but for the diseases of many others.
“Awareness means everything,” said Sarkar. “And we’ve been saying that with awareness there will come a cure. “
