Kids Battling Rare Diseases Enjoy ‘Normal’ Day At Nickelodeon Universe
MINNEAPOLIS (WCCO) – Despite the name, rare diseases are actually common as a whole.
One in 10 sick children have something that’s classified as a rare disease.
On Thursday they’re being honored with international Rare Disease Day. And on Saturday, they’ll get to ride the rides at Mall of America together.
Kevin Toussaint was born with Spina bifida along with other health problems.
But like any other 8-year-old, he lights up when you mention rides.
He loves the roller coaster at Nickelodeon Universe, but because he also suffers from a rare form of epilepsy, his mother has to bring a special drug along anywhere he goes.
“All seizures are severe, but if it lasts three minutes, it becomes life threatening,” his mother, Autumn said. “So this drug potentially does as the name says — it’s a rescue drug and rescues him.”
Kevin’s drug was created by the University of Minnesota’s Center for Orphan Drug Research.
And he is treated at Gillette Children’s Specialty Health Care where they see many rare diseases.
“A lot of times when you find that out, you feel completely alone, and you don’t know anyone else whose kid has the same problem,” Dr. Beverly Wical said.
But on Saturday, 150 kids with similar issues will enjoy the rides at the park.
“We do our best to make sure that everything is accessible for families and that they’re able to get on with ease, and have an enjoyable time while they’re here,” park manager Natasha Holt said.
And for one day, Kevin will feel like all the other kids.
“For him to see other kids going through the same things that he is just priceless,” Autumn said.