River Run for Ryan to be held Saturday, May 17
By Molly Moser
“Ryan’s amazing. He lives every day with challenges that we don’t even understand,” says Marie Hunt. Her son, Ryan, is a nine-year-old boy with MPS II, or Hunter Syndrome – but the condition hasn’t stopped him from living his life with joy. “He’s such a happy little boy. He has a great laugh. When he laughs, you have to laugh with him,” she smiles.
This month, the Hunt family will hold the fifth River Run for Ryan, a 5K run and one-mile walk that benefits the National MPS Society. The route begins in Ingleside Park and continues south on River Park Drive, before looping back to the north end of town and finishing with a stretch on the river walk along the levee.
The River Run for Ryan has been a rallying point for the Hunt family and the community, with sponsorships from over 30 local businesses and a growing number of individual contributors. “We appreciate all the community support for Ryan,” says Marie, who shares her family’s excitement over several new sponsors.
Jonathan and Marie Hunt live in rural Garnavillo. They’ve been married for almost two decades and share three children – Ryan, nine; Jana, 11; and Adam, 14. Eight years ago, the family relocated from Woodstock, Ontario, to Garnavillo.
“With all the challenges we have with Ryan and his health, he’s such a blessing. He brings a lot of joy to our family, and I think he’s changed his siblings in a way that they’ll always be different people,” Marie says. “They are so good with him.”
Since the last River Run in 2011, the Hunts have been following another kind of race. River Run for Ryan has taken on new meaning in the harness racing world, where horses pull drivers in carts called sulkies.
In 2011, Marie Hunt swapped seats as a favor to another woman on a flight from Maine to Iowa. She began writing thank you notes on notecards with Ryan’s photo, and the man next to her had lots of questions about her son. “Ryan’s story touched him,” Marie says.
That man was Marc Reynolds, a horse broker on his way to an auction. He asked Marie if he could name a horse after Ryan. “From there, it’s just been this amazing thing. It’s so much fun for our family,” Marie told The Press.
River Run for Ryan (the horse, not the event) is making a name for himself in the harness racing world. He won a race at Meadowlands Racetrack in New Jersey, and has raced at Younkers Raceway in New York. The Hunt family travelled to Maine to meet River Run for Ryan before a race, and son Adam got the chance to drive the horse on a lap around the track.
The Hunts live-stream River Run for Ryan’s races from the internet. “It’s so exciting for us. Our kitchen is just so loud when he’s racing!” smiles Marie. She says that although Reynolds would profit greatly from selling the successful horse, the broker has decided that River Run for Ryan is too special to sell.
While his horse gains fame, Ryan Hunt’s disease continues to progress. He continues weekly enzyme infusions of Elaprase, but the drug doesn’t pass through the blood-brain barrier – meaning it can’t help his central nervous system. A feeding tube has helped Ryan stay healthy through the winter, and a new drug is serving to relax his muscles. Ryan’s parents hope this will allow him more independence.
“This is why we’re so passionate about fundraising and finding a cure,” Marie says. “We just keep hoping for new science.”
Every penny of the money raised at River Run for Ryan is given to the National MPS Society. Many of Ryan’s nurses, teachers, and therapists join the roughly 250 participants on race day. This year’s run is May 17, in conjunction with MPS Awareness Day on May 15. Registration begins at 9:00 a.m., and the run/walk starts at 10:00 a.m. To register, visit http://mpssociety.org/fundraising/walkruns/races-registration/ and click River Run for Ryan.
Marie Hunt remains steadfast in the commitment to her family’s story being a joyful one. “The disease is progressing, but we do have so much happiness in our lives at the same time. We thank God for Ryan every day.” Planning the River Run for Ryan is one way the family expresses their gratitude and pays their blessings forward. Marie admits, “As parents, you feel so helpless most of the time. This is something you feel you can do to help.”