Benefit planned for Cowley boy with cerebral palsy

Billy Slabbert is a determined young boy, who has endured more in the first four years of his life than many experience in a lifetime. He loves horses and baseball and his large family. He has a smile that will melt your heart. He also has cerebral palsy.

Many of the simple things in life are impossible for Billy without assistance, like rolling over, reaching for an object, taking a sip of water, standing up for a few seconds, speaking or extending a hand to fist bump a friend. 

Billy’s parents, MaryBeth and Johannes Slabbert, noticed something wasn’t quite right when Billy was about three months old. He was not able to do the same things a three-month-old baby can do. He was also very small. After some testing, he was diagnosed with cerebral palsy. His parents were told he would never walk or talk. So far, with the help of physical therapy, family support and Botox injections to relax his muscles, he’s been able to surpass those expectations, but much more therapy is needed for him to continue to make gains.

Billy made good progress with the help of a physical therapist, who put in extra effort to help him. Unfortunately, the therapist died in a tragic accident, and, though Billy hasn’t regressed without equivalent therapy, he hasn’t moved forward in his physical capabilities either. 

Billy’s therapy has been sporadic at best since then, and the therapy he’s had has not yielded the same results. Though school based sources are available for Billy, his doctor is recommending an intensive medically-based treatment program for real progress. 

One of the effects of cerebral palsy is the development of contractures — a permanent tightening of the muscles, tendons, skin and nearby tissues that causes the joints to shorten and become very stiff. This prevents normal movement of a joint or other body part. Advanced therapies like ones recommended for Billy hinder the development of contractures and help him move. According to MaryBeth, Billy has very strong tone in his muscles which makes him particularly prone to contractures.

“Some experts in the medical community are saying that intensive therapy for three weeks, twice a year has better outcomes than weekly therapy for the whole year,” explained MaryBeth. “These intensive therapies go four hours a day, five days a week, for three weeks straight. They really push them (the patients) to their limits, without giving them a break.”

Two intensive programs have been recommended for Billy, a program in Salt Lake City called “Now I can” or a similar program in Denver at the Napa Center. Unfortunately, neither program is covered by the Slabbert’s medical insurance policy, and the programs are quite expensive and out of reach financially for the family.

The cost of the programs is between $6,000 and $10,000 per session, not including the cost of travel. A grant may pay for part of the cost of the program in Utah, but there isn’t a grant available for the program in Colorado. Billy is on a waiting list for the Napa Center program, but is unable to get on the waiting list in Utah without a large deposit. 

“The programs do essentially the same thing but are in two different locations,” MaryBeth said. 

Not having the proper therapy has stalled Billy’s progress. He receives Botox injections every three months, but the injections are expected to become less effective over time, ultimately requiring surgery to help him move. The recommended intensive therapies could help prevent the need for surgery and injections. 

Though he hasn’t had regular therapy for some time, MaryBeth has worked with him on her own to help him maintain the progress he made with therapy. She’s done the best she can but is by no means a replacement for regular physical therapy.

A robotic device designed to help children with disabilities called a TREXO machine has also been recommended to help Billy take steps. The equipment costs $30,000 to purchase but is available to lease for $1,000 a month. A philanthropist outside of Wyoming has offered to pay the lease for one year. There are complications though. 

“It’s kind of a Catch 22 because the equipment requires other equipment that we can’t get without the help of a physical therapist,” MaryBeth explained. “The equipment could help him a lot, because basically it walks for him and keeps his legs loose and moving so he doesn’t develop contractures. We’re on a waiting list for that, too, but the company won’t let us lease it without a physical therapist.”

The clock is ticking. Most experts the family has consulted agree that learning the basic skills that will make his life more independent in the long run are best learned in the first five or six years of life. Billy will turn 5 next month.

“The biggest thing right now is that Billy can’t do anything on his own,” explained MaryBeth. “He can roll but with a lot of difficulty and assistance. Even things like helping him sit up on his own or to hold his head up on his own are very difficult. So, anything that will help him become independent would be worthwhile, even if it’s just being able to power a wheelchair on his own.”

 “He knows what he wants, he just can’t always communicate what he wants,” said MaryBeth. “If you ask him a question, he can answer yes or no. He can say a few words like ride or play. So, he is able to communicate to a certain extent.”

The family remains optimistic that, given the right therapy, he can continue to make progress.

“He is such a happy boy,” said MaryBeth. “He is also very determined about what he wants and doesn’t want, and he’ll let you know. He is truly determined. So, who knows what the outcome will be.” 

A benefit team roping event will take place on Saturday, April 27, at the Cowley Rodeo grounds (see related article for details). An account has also been set up at the Bank of Lovell to accept donations that will be used for Billy’s medical expenses.

“We are so grateful for this fundraiser and for the people who are doing this to help us,” said MaryBeth. “It’s really hard to ask for help, but we don’t know what else to do. We are just so thankful and want everyone to know how much we appreciate them. We are truly humbled by their support.”