CEDAR CITY — At 4 months old, Ryder Spears was diagnosed with neurofibromatosis, a genetic disorder that affects almost every organ system in the body.
“It develops tumors all over the body that can grow inside or outside — his tumors grow inside,” Ryder’s mom, Chelsey Spears, said.
Neurofibromatosis is among the world’s most common genetic disorder, occurring in about one of every 3,000 births.
It can be life-threatening, leading to problems within various systems, organs and functions of the body. For Ryder, now 4 years old, the disease is terminal and has already begun to affect his life, both emotionally and physically.
“He’s going to lose his right leg,” Jonathon Spears, Ryder’s dad, said.
The Spears moved to Cedar City about four years ago. It wasn’t long after that move they learned about their son’s disease. Since then, their lives have been a series of weekly trips to the doctor and Primary Children’s Hospital. And with mounting medical debt, limited financial resources and no vehicle, every scheduled visit to Salt Lake City becomes an unknown.
“We don’t know always know how we’re going to get there,” Chelsey Spears said. “We’ve had to take the shuttle, the bus or someone takes us. Sometimes it’s been scary because we don’t have a lot of money and we don’t have a car. And this isn’t something we get to choose whether we do. Ryder has to go to the hospital.”
But amid the calamity, the Spears’ family finally got a chance to have some fun with a surprise “wish proclamation” party at Lin’s Market Monday.
Chaperoned by Cedar City’s finest, Ryder, his parents and his big sister Kynlie Carlson, all arrived at the party in police cars. Cedar City firefighters were also on scene to show their support.
After a short tour through the store and the kids’ choice of a donut, representatives from the Make-A-Wish Foundation presented Ryder with his wish — tickets to Disney World.
“I’m excited,” Chelsey Spears said. “I feel very grateful for this chance.”
Ryder’s dad said he was also grateful and humbled by the spirit of charity others had shown his family.
“This whole event has shown me that there are people out there that really care about others and are very selfless,” Jonathon Spears said.
The trip was paid for with donations collected by customers of Associated Foods’ 41 stores — Lin’s Market, Dick’s Market, Fresh Market, Macey’s and Dan’s — totaling $114,000. Besides Ryder’s wish, the money will pay to grant 23 more people their wishes.
“We have the most generous guests and are floored by the amount they helped us raise for Make-A-Wish Utah. We wouldn’t be able to help so many children without them,” said Steve Holm, district manager for Lin’s. “They always step up to make the star icon drive a huge success and we’re so grateful to them.”
Cedar City Lin’s employee Mackenzi Cook, who raised approximately $2,000 by herself, secured the most donations of anyone within the 41 stores. As her reward, the store presented her with two tickets to Disneyland. The 19-year-old said she’s taking her mom and looking forward to the trip.
“I’m really excited,” Cook said. “I don’t know exactly how I did it. I just kept asking people when they went through my line if they wanted to donate.”
The first quarter of 2017, Make-A-Wish Foundation of Utah received the names of 17 children living in Iron and Washington counties, an extraordinarily high number for just three months, Jan McIntyre, assistant store director for Lin’s, said.
“The Make-A-Wish Foundation people said they usually get that many people in a whole year,” McIntyre said. “But this year they got that many just in the first quarter.”
Make-A-Wish Utah grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. Located in its facility in Murray, Make-A-Wish Utah offers a life-affirming wish experience at a time of critical need. For more information, visit the organization’s website or call 801-262-9474.
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