ON THE WEB
For more information about the Miami Valley Wheelchair Basketball League, log on to miamivalleyadaptedsports.org.
When Drew and Mindy Hilgeford of Riverside found out they were having their first baby more than 12 years ago, like most new parents they were excited.
“My 20 week ultrasound revealed the baby had a club foot, but otherwise everything looked fine,” Mindy said. “When Alex was born he had some soft tissue deformities and doctors diagnosed him with Popliteal Pterygium Syndrome (PPS).”
PPS is a rare inherited disorder that affects the development of the skin, and often results in webbing of the hands, feet and joints. In Alex’s case, one leg was contracted up when he was born and he had a cleft and he couldn’t open his mouth.
“They took Alex straight to Dayton Children’s for surgery to open his mouth,” Mindy said. “He had a posterior cleft palate. But we were lucky that in Alex’s case, the syndrome only really affected his knee joints.”
As Alex grew, his severely affected right leg wasn’t getting better. And at 8 months old doctors tried to release the tendons in his legs.
“I always describe the legs like a chicken wing,” Drew said. “He had motion, but it wouldn’t open up straight.”
After his first surgery, Alex had more range of motion and both legs were straight for the first time. But his parents said he still had casts and braces “on and off for a couple of years. We got to the point when none of those things were working,” Mindy said.
And so began years of painful devices, called fixators that have pins that screw into the bone.
“It was a several month long, painful process of pushing pins into his leg and cranking them several times a day,” Mindy said.
Alex had several fixators, but after their removal and within a few weeks, Alex’s right leg bent up once again. And though he learned to be mobile with the fixator on, after doctors attempted another at age 6 and it didn’t work, the family decided to go a different route.
“We always knew there was not a huge success rate for fixators in this syndrome,” Drew said. “It’s very rare and we were all frustrated.”
Most frustrated of all was then 6-year-old Alex, who is naturally active and loves to do anything outdoors, including hunting with his dad.
“I sat down with him one night and we had watched videos of prosthesis,” Mindy said. “Alex looked at me and said ‘let’s cut it off!’ “
Though Alex’s doctor hesitated to recommend amputation, the family knew that with a new leg, Alex could stand up straight, hike and even jog.
“A prosthetic leg would let him do anything he wanted,” Drew said.
Alex had his above-the-knee amputation of his right leg with no issues and he and his dad then traveled to Shriner’s Hospital in Lexington, Ky., to get fitted for his first prosthetic limb.
“Alex did really well with his new leg,” Drew said. “They told us he would be there seven to ten days and after 2 ½ days, they told us we could go home.”
Alex was able to stand up straight for the first time in his life.
“I felt so much taller and it felt good when I stood up,” Alex said.
Alex and his dad drove home to surprise his mom at Dayton Children’s where she is a nurse.
“He came down the hallway and gave me biggest hug I’ve ever had,” Mindy said. “He was already walking like he had this leg his entire life. And he was so happy.”
Today Alex is an active 12 year old who attends St. Helen’s School in Riverside, where he will be starting sixth grade. His prosthetic must be frequently replaced as he grows, but he is pain free and his mom and dad know this was the best decision.
“Making this decision was tough, but I felt I was letting him down with all the procedures,” Mindy said. “He has always been very active and you couldn’t stop him. We wanted to give him a chance at the active life he deserves – that every child deserves.”
Alex plays wheelchair basketball and loves it, though he doesn’t use a wheelchair in his day-to-day life. For the second summer in a row, he attended a local amputee camp, the Paddy Rossbach Youth Camp, at Camp Joy in Clarksville. The five-day camp is for children, ages 10 to 17, who have lost arms and/or legs or who were born with limb differences. The camp offers activities, such as zip lining, fishing, swimming and of course, the traditional campfire activities like roasting marshmallows.
Mindy said that since Alex almost immediately became comfortable with his new leg, he asked why he had to play basketball in a wheelchair.
“I have two legs,” he said. “Why do I need a chair?”
But since every player in this league uses a chair, it is a requirement. “It took Alex a very short time to become very quick and agile in a wheelchair,” Mindy said. “Any youth with a disability who is interested in playing doesn’t have to use a chair at all, except on the court!”
About the Author