Stansbury teenager Riley Porter, or “Sunshine,” as his coach calls him, doesn’t let his rare genetic disorder stop him from playing basketball or being optimistic about the future.
Porter plays for the Utah Rush Basketball Team, Utah’s only junior league wheelchair basketball program, part of Neuroworx Adaptive Sports Program.
Porter has been diagnosed with Mucopolysaccharidosis IV, called MPS IV for short.
The disorder belongs to a group of inherited metabolic diseases that cause the body to lack the ability to break down long chains of sugar molecules.
“I was born with it and diagnosed a couple years ago,” Porter said. “We did a genetic test, because it was free and it came back that I was missing this enzyme … I get infusions every week for four or five hours. A nurse comes over and puts an IV in and I get some medicine. That medicine is an enzyme replacement treatment.”
There is a classical version of the disorder and a nonclassical version. Porter has been diagnosed as nonclassical, meaning that it is hard to tell that Porter has the disease.
“Normally, people with the disorder are littler than normal,” Porter explained. “They are like two or three feet tall … For me, this is all on the inside and you can’t see it.”
Porter’s disorder causes pain, fatigue, and issues with his organs.
MPS IV is very rare, with only one in 200,000 to 300,000 individuals diagnosed.
Before Porter was diagnosed correctly, his doctors weren’t quite sure what condition he was suffering from. The lack of diagnosis caused Porter’s joints to deteriorate a bit.
Porter is still able to walk, but sometimes gets tired and uses his wheelchair. He plays basketball solely from his chair.
Porter started practicing with the Utah Rush before he was diagnosed when he was 9 years old after his sister’s friend told him about the team. By the time he was around 13 years old, he was able to play in tournaments.
His coach calls him “Sunshine,” because of the way he lights up practice and game times with his smile.
Currently, there are seven members on his team.
The group practices twice a week at Neuroworx in Sandy and encourages members to also practice on their own time.
Members are from all over Utah and one player is from Idaho.
Members of the team all live with different ailments, including spina bifida, the aftermath of auto accidents, and loss of limbs.
“Each chair has their own story,” Porter said.
Rush’s season begins in August, with tournaments starting in October and going until March.
“Our tournaments are usually out of state,” Porter said. “We are always flying places to play teams. This year, we went to Washington, Minnesota, and Wisconsin.”
Porter’s mom usually travels with him to out of state tournaments, but sometimes he travels with his friend and his dad.
When team members arrive, they rent two buses: one to hold the players and one to hold their chairs and equipment.
During their time traveling, they do everything together, including shopping and going out to eat.
Tournaments include several games, usually around four.
“It all depends on where we go and how many teams show up,” Porter explained, speaking about tournaments. “When we were invited to the Midwest, there were a ton of teams, so there were two separate kinds of brackets, like a gold bracket and a silver bracket.”
The team has done pretty good this year, according to Porter.
“We have a pretty stable team this year and we’ve done pretty good,” he said.
The group recently played a tournament earlier this month here in Utah at Weber State University and took third.
“Family, friends, church members, his youth group, and neighbors came out to watch the tournament,” said Tricia Porter, Riley’s mother. “It was a lot of fun.”
Also during the tournament, Porter was recognized as one of the best players there.
Nationals will take place on March 24-26 in Kansas.
The rules of wheelchair basketball are the same as standing basketball and the hoop is the same height.
“You’re sitting down, so it’s all upper body and arms,” Porter said. “You can’t use your legs to get that spring you see in regular basketball. It’s crazy.”
The sport also involves a lot of contact.
“It’s like taking hockey contact and applying it to basketball,” Porter explained. “A lot of people are surprised about the amount of contact there is.”
During games, members of the team talk to each other to communicate their next moves.
The referee is also in a wheelchair during games.
Porter loves his team and coaches.
“They are really nice people and so fun to be around,” he said. “It’s a fun environment. A lot of work goes into it. The coaches are really fun and nice. They really push you to do well in school to be able to play basketball and show team effort.”
“The team members are all very supportive and just like one big family,” Tricia Porter said about her son’s team. “They help each other out on and off the court.”
Playing with his team has given Porter something to do and provided him with encouragement.
“It’s something to look forward to,” he said. “This has really lifted up my life a lot … This sport has saved my life.”
Although Porter loves his sport, there are challenges, including finding locations for his solo practice time, the money it costs to travel with the team, and suffering from fatigue.
“With Riley’s disease, he gets more fatigued,” Tricia Porter said. “His joints and muscles start to tighten up … About half time, his coach pulls him out to rest for a minute, but he just has so much fun.”
Porter’s parents are very proud of him.
“He’s gone through a lot in the past few years,” Tricia Porter said. “His disease is very progressive and he feels like an eighty-year-old man inside, because of his bones and joints, and his organs … It’s been fun watching him find joy in this sport, because he does have his everyday challenges … It’s just so fun watching him light up.”
Despite challenges, Porter looks to the future with anticipation.
Porter plans to attend college and play basketball on a full-ride scholarship, but he isn’t sure where or what he will study while he is there. He also wants to attend the Paralympics one day.
He may join the Utah Rush adult team in the future too if he ends up back in Utah.
Porter encourages others to follow their dreams, despite challenges.
“Keep your head up, push through it, and try to keep a smile on your face,” Porter said. “You can always ask for help if you need help with something.”
If you know a young person who would like to join the Utah Rush team, email Porter’s coach, Adam Linsay, at alindsay@alphatransport.com or call him at 801-910-3494.
If enough young people show interest, Lindsay may be able to create another team or two.
“We are very welcoming,” Porter said, talking about the coaches and kids he plays with. “We work with people and get them into the sport. We don’t just throw everything at them.”