Helping hands in Mankato FreePress
Father of disabled child fundraising for similar families
By Amanda Dyslin
Special to The Free Press
ST. PETER – Kylie MaeJoy Spurling is a sweet and beautiful 10-year-old. The apple of her father Travis Spurling’s eye.
Like any father, he loves her, wants the best for her, would do anything for her. But unlike most fathers, he’s had to work a lot harder to make sure Kylie gets what she needs.
Kylie’s severe epilepsy started at 3 months old. She was having 80 to 100 seizures a day, and her parents and doctors tried everything. Admitted to St. Paul Children’s Hospital for six months, she underwent a battery of tests and was put into a medically induced coma to reset her brain. They even tried special diets. Nothing worked.
Kylie’s scoliosis set in after the seizures. Cognitively, she developed to an 8-month-old level. She became wheelchair-bound, where she always will remain.
“It was extremely hard,” said Spurling of St. Peter, looking back on the early stages of his daughter’s diagnosis. “She can’t walk, can’t crawl. It’s like a vegetative state. She is able to look at you and do baby noises, but other than that, nothing.”
Coupled with the difficulty of coping with his daughter’s medical needs came the anxiety of finances. He had been the manager of Payless and had to take leave for the six months Kylie was at Children’s Hospital. He later worked at the Verizon Wireless call center, but Kylie’s needs made working too difficult.
Now the government-funded Consumer Directed Community Supports program pays for Kylie’s home staffing, including Spurling and a registered nurse. This allows him to be home with his daughter.
The freedom and flexibility the program allows has been enormously helpful, he said. But as he’s navigated the complicated roads of government-funded programs for those with disabilities, he’s noticed that there are things that aren’t covered.
“Like, for example, (Medical Assistance) won’t pay for a certain kind of syringe that would be much easier for parents,” Spurling said. “There are just certain things that make your life easier and make your kid’s life easier that aren’t covered.”
Some kids with disabilities are soothed by music. Some need art supplies for school. There are hundreds of little things that families with work-based incomes may not realize are little luxuries for those with children with special needs.
This gave Spurling an idea. A couple of years ago he had started an online business called KMS Wholesale, which sold home décor items. He’d buy the products at a discount and have them shipped at a higher purchase price to consumers. About 90 percent of the profits went to St. Paul Children’s Hospital and Gillette Children’s, and the other 10 percent went to the cost of the website.
None of the money went to the Spurlings. He simply wanted to give back.
“After that, Kylie started getting extremely sick, and I was unable to fully commit to the website,” he said.
Now that Kylie is stable again, Spurling got another such website going again at LuckyFragrance.com, this time focusing just on fragrances. And instead of directing proceeds to the children’s hospitals, he decided to focus all proceeds on helping other families with disabled children.
“I started thinking about all the other families out there I’ve been seeing – all these families that the county won’t help get them certain things because they are not medically necessary,” Spurling said.
On Facebook, Spurling has contacted administrators of support groups of families with disabled children. Families fill out a form with the items they need and a shipping address, and Spurling fundraises to fill the orders through both sales on LuckyFragrance.com and private donors.
He’s just getting started, but he’s already shipped school supplies for physical and occupational therapy, books, art supplies, therapy putty and a Disney CD.
“Music really helps some of them to relax,” he said. “I also got her a pink doll. The girl likes her pink.”
A mom of another boy contacted Spurling about how much music relaxes him, too.
“And insurance companies won’t buy that. They say a drug will do the same thing,” Spurling said. “A lot of parents believe what I do: We don’t want to drug our kids up if we don’t have to.”
One of Spurling’s most special moments came several weeks ago when he personally delivered a wooden swing set to a family with 15 children, 14 of whom have disabilities.
“My heart completely dropped for them,” he said.
Spurling said having Kylie has made him stronger, but at the same time he knows how difficult it can be to be a parent of a child with disabilities. He just wants to do something to make their lives easier.
“I’m in the same boat,” he said. “As a parent, you want to do everything you can for your kid.”