Ryan Austin received a roar of support for his battle with Hunter Syndrome on March 8.
Ryan’s parents, Lindsay and Matt Austin of Papillion, along with family and friends, helped to organize a fundraiser for “Ryan Our Lion.”
About 650 people attended the event held at Bryan High School. Lindsay Austin said the event raised more money than they had expected, but she declined to give a total amount donated.
“We’re extremely grateful for everyone who supported us,” Austin said.
A portion of the money raised through the pasta feed, silent auction and raffles will go toward some of Ryan’s medical expenses and travel required for medical observation, Austin said.
Insurance only pays for one Food and Drug Administration-approved drug, Elaprase. Elaprase slows the disease’s progress on the body, but it doesn’t slow the disease’s progress on the mind.
Because the disease is so rare and little research on it is being done, other promising treatments aren’t approved or covered by insurance, Austin said.
Austin said they’re starting a different treatment, not covered by insurance. For a 90-day prescription, the cost is just over $2,000.
The remaining funds raised at the event will go to the foundation Help Extinguish Hunter Syndrome. The foundation is run by parents of children with Hunter Syndrome, Austin said.
Austin said they plan on hosting more events throughout the year, including a “Run for Ryan” event in the fall.
“With how rare Hunter Syndrome is, there is little to no awareness. Without our determination and drive to raise funds or awareness, there would be nothing done for our boys,” Austin said. “That’s why it’s our goal to try and raise awareness for this particular disease — so that these children and their families can have hope, to give them treatment options, to give them a chance at a longer life.”