Principal helps raise funds for van for Pekin boys with muscular dystrophy

By Elise Zwicky for Chronicle Media

Josh Norman, principal at Pekin’s Wilson Intermediate School, poses with sixth-grader Austin Phillips, who, along with his 10-year-old brother Jackson, has Duchenne muscular dystrophy. Norman has teamed up with a retired executive from the local children’s hospital to start a GoFundMe page to purchase a wheelchair accessible van for Austin’s family. (Photo courtesy of Josh Norman)

Like most moms, Courtney Price would love to take her two young sons to fun places like zoos and museums. However, because both boys use wheelchairs due to a rare form of muscular dystrophy, just taking them to a grocery store is extremely difficult.

Price drives an old Ford Fusion with more than 200,000 miles on it. Twelve-year-old Austin uses a motorized wheelchair that won’t fit in the car at all. He and his 10-year-old brother Jackson also share a manual wheelchair, which Price can cram into her trunk if she removes the back wheels.

“Having (a wheelchair accessible van) would give us more freedom. When we go somewhere, I have to carry Jackson or I have to pull him in a wagon and push Austin at the same time,” Price said. “If I had a vehicle that I could get them both into, we could go and do more things that they would enjoy. Right now we’re mostly stuck at home.”

A single mother who works full-time as a program coordinator for the Tazewell County Health Department’s 21st Century Schools latchkey program, Price has been trying to save up for an accessible van, but knows that could take years.

Given that Austin and Jackson’s disease is steadily progressing, Austin’s principal at Pekin’s Wilson Intermediate School and a retired executive from the local children’s hospital who volunteers at the school decided to step in and help the family get a specialized van much sooner.

“We decided enough is enough,” said Principal Josh Norman, who has started a GoFundMe page with Sue Ann Kortkamp, retired Foundation Executive Director of OSF Saint Francis Medical Center and the Children’s Hospital of Illinois, to purchase an accessible van for the family.

The campaign has set a goal of $32,500 to purchase a new or nearly new van due to the requirements of the Division of Specialized Care for Children, which has agreed to provide and install the specialized wheelchair lift once a van is purchased.

“They’ll cut into the back of the van and put a conversion ramp in the back,” Norman said. “The conversion alone is $15,000.”

Because of the cost of the conversion, DSCC requires that the van be no older than a 2014 and have no more than 40,000 miles.

“They don’t want to put all this money into converting a van and then have it break down two years later. We don’t want Courtney to have to deal with that either,” Norman said.

Price is willing to take on a car payment if necessary, but Norman and Kortkamp are hoping to raise the full amount.

Courtney Price of Pekin sits with her sons, 10-year-old Jackson and 12-year-old Austin, who both have Duchenne muscular dystrophy. A GoFundMe campaign is underway to buy the family a wheelchair accessible van that would give Price and her boys more freedom to take trips and make memories. (Photo courtesy of Courtney Price)

“The problem I have with that is she’d have very little money left to do things with the boys. They both have Duchenne muscular dystrophy, which limits their ability to walk and will shorten their lifespan. I really want her to be able to have a van she can use to make memories with them,” Norman said.

Both boys were diagnosed at about 3 years old. Doctors discovered Austin had it when Price noticed he was struggling to climb stairs. After Austin’s diagnosis, Price learned she’s a carrier for the disease.

“Jackson didn’t really have any symptoms so I didn’t think he actually had it. I just wanted to have him tested for my peace of mind, and it came back that, yes, he does have it,” Price said quietly. “Since I’m a carrier, they had a 50/50 chance of having it.”

Asked to describe her boys, Price’s voice lifted happily. “They’re loving boys,” she said.  “Austin is my worrier. He likes to make everybody happy. He doesn’t like to upset people. He’s strong-willed, but he would do what he could for just about anybody. Jackson is my outgoing one. He likes to make people laugh. He’s super smart but goofy at the same time.”

Norman said Austin has won over just about everybody at the school since transferring from Delavan last year.

Pekin Grade School District 108 does have a specialized van that could transport the boys to and from school during regular school hours, but Price can’t utilize it because her work hours require her to put the boys in latchkey care before and after school. At Norman’s suggestion, she did use the bus once with the help of a family member to stay with Austin after she went to work so she could get his motorized wheelchair to his school, where it will stay until she has a specialized van.

“I suggested he have the motorized chair at school because Austin doesn’t have the freedom and mobility without it. He relied on self-pushing or kids pushing him, but he wants to be independent just like every other kid,” Norman said. “He’s a good kid. He’s truly trying to lead a normal life despite the hand he’s been dealt.”

Jackson, who will be at Wilson Intermediate School next year, is currently transitioning from being able to walk to having to use a wheelchair.

“Courtney is hardworking and doesn’t ask for help,” Norman said. “Her expectation is that we treat her boys the way we treat any other kid. It’s very clear to anybody that comes into contact with her that these kids are her life.”

As of last week, the fund had generated $9,500 in donations. About $2,000 was raised through a breakfast hosted by the Pekin Kiwanis. The club will host another breakfast fundraiser from 8 to 11 a.m. Jan. 21 at the Pekin Moose Lodge.

“It melts my heart that people are willing to help us,” Price said. “The boys are aware of the efforts to get a van, and they are very excited. They keep talking about when we get it what we’re going to. They’re making all kinds of plans.”

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