BY DANI TIETZ
dani@mahometnews.com
Moms and dads, aunts and uncles, grandmas and grandpas often collect drawings from the children they love and hang them on the refrigerator.
Seldom does a child’s drawing make it into the hands of a stranger. Rarely is a child’s drawing sold for $700.
But for 17-year old Jordan Stiverson from St. Joseph and 14-year old Summer Nagele from Champaign, selling their drawing for $700 at the first annual Bunny’s Bash for MDA six years ago is just a small part of their remarkable story.
Bunny’s Bash for MDA began as a way for Jordan’s and Summer’s families and friends to give back to the MDA (Muscular Dystrophy Association) that gives so much to them.
Both Jordan and Summer have neuromuscular diseases.
At nine-months old, Jordan was diagnosed with Duchenne Muscular Dystrophy. Summer wasn’t diagnosed with Congenital Myasthenic Syndrome until she was 8 1/2 years old.
On a national level, the MDA is currently funding 180 research projects for muscular dystrophy and diseases of the nervous system and muscular system. They help to provide local resources for families and educate healthcare professionals and the general public about neuromuscular diseases.
Local MDA units, usually powered by volunteers, help to provide resources and supplies that children with neuromuscular diseases need. But the highlight for Jordan and Summer is the funding and opportunity to go to Summer Camp for one week each year.
“It’s a full week of ‘I can’ and no ‘I can’ts,” Autumn Nagele, Summer’s mom, said.
The week is full of everything that summer camp should include: swimming, zip-lining and dancing.
Jordan said his favorite thing to do at camp is to fish while Summer enjoys swimming, horseback riding and art.
While there, the MDA provides a volunteer “buddy” for each child, makes sure that all of their needs are taken care of and provides a full-medical staff.
“They take care of everything that you can imagine,” Autumn said.
“It’s a full-week of independence for our kids, too,” she continued. “They are not under our wing that week. They are able to be independent away from mom and dad and just have fun. We believe it’s helped (Summer) reach out and grow.”
Memories of camp also helped Summer through one of her toughest fights.
In December of 2017, she went through spinal fusion surgery.
“Two rods, 17 screws and 2 hooks,” Summer said. “It took 8 hours.”
“When Summer was in the hospital, there was a lot of talk about memories of summer camp to help get her through some pretty tough times,” Autumn said.
Jordan had spinal fusion surgery the following September.
He, and his mom, Melissa Schrock, made it through their tough times with a little help from their friends.
Jordan’s and Summer’s surgeons are brothers who followed the same specialty, but practice separately in St. Louis and Chicago.
Summer happened to be in St. Louis during Jordan’s surgery. She was at the neurology clinic in the same building. Before Summer and Autumn left, they stopped to give Melissa a card.
“She told me, ‘Don’t open this one until you feel like you need it,’ Melissa said.
“And I didn’t. I kept it for a week.”
It was at that time that Jordan was transferred back to the ICU for the second time.
As Melissa opened the envelope, she saw a picture of Summer holding a sign that reads, “It’s Okay.”
“You just know what each other needs,” Melissa said.
“You can’t put a word on it,” Autumn agreed. “You can’t go to anyone else for that kind of support. She gets it. She’s my mom-friend that gets it. When you have a kid who has a neuromuscular disease it can be pretty isolating sometimes. When you have a friend as close as we are that you can just go to and look at her, and she gets it.”
Going to camp is that place for Jordan and Summer.
While the two have each other to visit and hang out with throughout the year, they get to spend one whole week surrounded by others who share the same zest for life and the same struggles as they do on a daily basis.
Back home, Jordan said he gets to “share the journey” with Summer.
A charismatic young woman, Summer is left speechless when she thinks about having a friend like Jordan to walk through this life with.
On May 11, from 2 to 8 p.m. at Bunny’s Tavern, located at 119 W. Water St. in Urbana, Summer and Jordan invite their family and friends, neighbors and strangers to walk through life with them as they raise money at the sixth-annual Bunny’s Bash for MDA.
The $700 they raised from their drawings at the first Bunny’s Bash has grown into $85,000 over five years. This year the friends hope to raise an additional $40,000 to help fund research, resources and camp for kids with neuromuscular diseases.
“We’ve got a lot of sponsors who have jumped on board who believe in our case and support our cause, including the mayor of Urbana (Diane Marlin) and Champaign (Deb Feinen),” Ben Manns, owner of Bunny’s Tavern said.
Marlin and Feinen, alongside members of the Urbana Fire Department will be volunteering at the event.
Jordan and Summer have called on Captain America, Batman, Spiderman and Black Panther to be at the 2019 fundraiser. After Curfew and Smoke N Whiskey will also perform as a magician shows off his tricks and a face painter works their magic behind the brush.
The event will also include a live and silent auction, raffle tickets for a chance to win $1,000 (first prize), a $750 grill (second prize) or $250 (third prize). Tickets are $5 each or 6 for $20. Portions of food sales will also go to benefit the Central Illinois MDA.
Residents in the St. Joseph or Ogden area can pick up raffle tickets from Melissa Schrock prior to the event next weekend. Raffle ticket holders do not have to be present at the event to claim their prize.
Eighty-cents of each dollar MDA raises goes toward research and to support families who have children with neuromuscular diseases. Locally, 97 cents of each dollar raised goes towards research and support because of all the volunteer work that goes into raising those dollars.
For community members who cannot make the event, Jordan and Summer have provided a way to donate online.
Bunny’s Bash for MDA has become the largest single fundraising event for kids with degenerative illnesses in Central Illinois over the last six years.
Admission to Bunny’s Bash is free and open to the public.
