Posted - December 2012 in Living with HSP - Management & Treatment News
The benefits of therapy and activity
William Bell from Victoria
A 10-year-old boy from Victoria has realised his dream of playing football with his friends despite having HSP. Here is his story from the local newspaper, the Wyndham Weekly.
THERE’S no wiping the smile off William Bell’s face. The Wyndham Vale boy, 10, has always wanted to play Auskick with his friends, but until four months ago it was an impossible dream.
William has spastic paraparesis, a rare neurological condition that causes difficulties with the control and power of his legs, similar to the effects of cerebral palsy, and requires the assistance of crutches to walk.
William’s battle was first featured in this newspaper in 2007, when his mother Donna Strong appealed for the community to help raise money to install a pool in their backyard to allow William to get swimming therapy. Wyndham residents opened their hearts and $10,500 was donated.
In the past five years, William has undergone countless hours of therapy in the pool and had surgery in 2010 to extend his muscles and remove the tightness in his legs.
In April, he finally started playing Auskick at Werribee Football Club with his friends. Until then, the avid Richmond fan had been making do with throwing a football around his backyard with his mum because he couldn’t let go of his walking frame to kick the ball.
Ms Strong said being able to play was a dream come true for William.
“He still can’t pick the ball up and kick it but he kicks it along the ground. He just loves it.”
William also had the chance to take to the field with his teammates at half-time of last month’s North Melbourne-Carlton clash at Etihad Stadium.
By Laura Little
Aug. 21, 2012
. . . . .
Connor Aguilar-Poggetto of Carmichael, California
Carmichael teen excels in disabled waterskiing
By Corrie Pelc Valley Community Newspapers writer [email protected]
If Nike needs a new spokesperson for their “Just Do It” campaign, they should look no further than 15-year-old Carmichael resident Connor Aguilar-Poggetto.
That’s because when not in class as a sophomore at Rio Americano High School, Connor is on the water perfecting his 360s, 720s, wake fronts and wake backs as a competitive disabled water-skier.
“Water is my nirvana – once I’m around a boat or on the water, I’m calm,” Connor said. “All I think about is what’s on the water right now and what I’m going to go do.”
According to his mother, Dianna Poggetto, at the age of 4 Connor was diagnosed with a rare disease called hereditary spastic paraparesis (HSP), which normally effects people in their 40s and 50s. “Primarily what that means is that the brain doesn’t know Connor has any muscles from the knees down – it’s not sending the proper signal,” Poggetto explains.
Poggetto says because the disease affected Connor as a child, he has had a number of skeletal issues causing him to have numerous surgeries throughout the years. “There were years where he was sitting in the hospital for a good month just with different body parts broken in order to just straighten out his skeletal system,” she says.
Right now although Connor mainly uses a wheelchair, he does have some mobility. For instance, Poggetto says he can put his wheelchair in their car and walk around it. However, being HSP is a degenerative and progressive disease, some days Connor loses the ability to walk even that short a distance, and at some point he may become completely paralyzed. “As he’s gotten older, we’ve accepted the fact that you’re going to have different challenges with your body and that’s where we are right now,” Poggetto says.
Finding a Passion
Despite her son’s obvious challenges, Poggetto does what she can to give him and her family a sense of normalcy. “Life goes on – he still has chores, he still has the responsibilities of living in a household,” she explains.
Connor also began getting involved in something most kids do – sports. Connor says he first began waterskiing when he was about 6 years old. At first it was just for fun, but about two years ago he started to take it more seriously when he began to train for competition. “I actually said OK, this is what I’m going to do and I’m going to go out and do this,” he adds.
Connor’s specialty is trick skiing, which in competition does not allow repeat tricks. “You have to have a big repertoire of tricks,” he says. Some of Connor’s favorite tricks are the wake 360 where he goes up on a wake, does a 360 in the air and lands. He also enjoys 720s, wake backs and wake fronts.
Rather than standing on his skis, Connor stays in a seated position and uses a standard wakeboard mounted with a special cage that he can sit in. From there, Connor says the tricks are all about a lot of handgrip and body positioning. “If you can hold on to it and you hold your body in the right position, you’re going to land a trick,” he says.
A Winning Spirit
This past August, Connor competed against 26 other skiers from across the United States in the 2012 Disabled Waterski Championships held in Elk Grove, and came in second in his division.
During the Championships, Connor was awarded the Royce Andes Award, which Poggetto says is given every two years to an up-and-coming skier “who really symbolizes what disabled skiing is all about.”
“That is given to the best youngest national skier who has the most potential to go all the way, so that in itself is a huge honor to get,” Connor says.
She explains the award is named for Royce Andes, a former barefoot water-skier who broke his neck and became a quadriplegic, and who created disabled waterskiing. “He lives up in the Live Oak area and so he has seen Connor ski from when he was 6 and actually built him a smaller cage,” she says. “So to receive that award meant more just because we have known Royce through the years.”
And if that wasn’t enough, at the end of the Championships Connor was named one of 11 members of the 2013 US Disabled Waterski Team, which will compete in Milan, Italy, July 1-7, 2013, making him one of the youngest athletes to be named to the team. “I was speechless – it hasn’t even really set in yet for me,” Connor says about being named to the world team.
For the world competition, Connor says he will be ramping up his training – literally – as he’ll be working on jumps and tackling the back flip. “If I can land a back flip pretty quick, then I’ll do a back flip to revert, which is doing a back flip and landing backwards, so I’m super excited to start doing that,” he says.
Learning tricks like this will take patience, which Connor says is something he’s learned quite a bit about through his competitive waterskiing. “If I rush a trick, I probably am going to mess up on that trick, so smooth and methodical is faster,” he explains. “I’ve brought that into a lot of aspects of my life – doing homework, doing schoolwork in school, doing things around the house. The smoother and easier you flow, the faster you’re going to go.”
Looking to the future, Connor plans to continue to water-ski and study sports medicine once he graduates high school. He plans to just go for it, which is also a message he hopes to give others afraid of trying new things. “Sometimes you have to overcome your fears – just go for it and you can create something out of nothing,” he says.