Michael

IMG_0136About 6 months ago I was helping out at Wheels on Fire in San Jose on a sunny Saturday afternoon. Wheels on Fire is a club of sorts. It’s a place where athletes of all ages can go and play different sports each week under the supervision of wheelchair bound and non wheelchair coaches. I’d been enjoying my regular visits to WOF for many years, assisting many of the young athletes achieve their personal goals by raising money to buy them sport wheelchairs. If you’ve read previous articles on this blog you’ll know that I have personally funded or been able to raise funds to help over 15 disabled athletes ditch their regular wheelchairs, one’s which are virtually impossible to play sports in, and upgrade them into sport chairs,  opening up a completely new dimension for them when it comes to games participation. It’s been an incredible experience, not only for me, but for all the other’s I’ve introduced to WOF, other’s such as the softball team my daughter played on, Bay Blizzard, another team from San Jose City College coached by Debbie Rooney and a soccer team from Silicon Valley coached by my friend Ben Maxwell. On each occasion the disabled athletes have been challenged by the athletes from the teams mentioned above to play their sports in chairs and not on two feet. It’s an eye-opening experience for all and an experience that the able-bodied have come away from with a new appreciation on just how difficult life is when you are permanently wheelchair bound. When you talk to Alicia, Lee, Anna and the other athletes at WOF, they are super positive, superbly optimistic and genuinely overwhelmed by the support provided not only by me but by everyone who has had the privilege of competing with and fully understanding the difficulties these athletes face on a daily basis. And so, on that particular Saturday all those months ago, I walked into the gym on Union Ave in San Jose and I met Michael.

Michael was shy at first but then within moments became a fierce competitor in the games we were playing. At that time, Michael had a regular chair, although it cost an absolute fortune to purchase this for him. At 6 years of age, I could tell immediately Michael was a true competitor. I walked up to his mother Tricia and suggested that we try to raise funds to buy Michael a new sport chair. Tricia was hesitant, but knew that I was being very serious and after a few moments, when the realization sunk in that my offer was serious, she accepted. I wanted to know more about Michael, and as you will read below, this is how his condition was described to me by his mother.

Michael was diagnosed at age one with Central Core Myopathy, a genetic disease that affects the muscles throughout his body. In conjunction with this he has scoliosis of his spine and problems with his hip sockets.

By age two he had two surgeries to correct his hip dysplasia and was in a full body cast each time for six weeks. At age four and a half he had his first spine surgery to place rods on each side of his spine to straighten his spine.   Every six months he continues to have surgery to lengthen the rods to accommodate for his growth.

He has physical therapy and occupational therapy sessions weekly since his very first surgeries.

And, in between all of these medical procedures (and because of these procedures) he can participate in sports activities. In fact, his sports activities have become his “life.” He participates in wheelchair soccer, and little league baseball where he has made numerous friends and thrives on the team spirit with his teammates and coaches. He takes swimming lessons and even goes bowling. He is an avid Sharks, 49er and Giants fan.

As an example of sports being so important to him, he recently had surgery to lengthen the rods in his spine. He was signed up for sports camp for two weeks after his surgery.   There were some complications and he ended up in the hospital for eight days and had two surgeries during those eight days. Hope was dwindling while he was in the hospital that he would be able to go to camp. He was released from the hospital on Saturday and there was nothing that would keep him from going to camp on Monday morning – he went!

He is in his wheelchair for all of his sports activities, but he does have leg braces that allow him to stand and walk a short distance. When he graduated from kindergarten earlier this year, he walked with his braces part way across the classroom to receive his diploma (refusing an outstretched hand to help him for balance along the way.) His future goal is to walk across the entire stage to receive his high school diploma.

He’s just a six year old kid with a desire to do everything (especially sports) that any other kids his age can do. It just takes him a little more effort of which he seems to have an unending supply. Sports camps and activities in the community provide him that opportunity to be just like every other kid.

Michael Chair 5I called my friend Debbie Rooney, she’s the coach for the softball team at San Jose City college. Debbie had helped me raise money in the past to buy two other chairs that we’d presented to athletes in 2014. “Debbie” I said, “you told me you wanted to go out and raise money, as a team, for another chair, well I have the perfect candidate” And so it was initiated. The team started fund-raising and within 4 moths all the money to purchase this chair for Michael was raised and banked. These chairs don’t come cheap. They cost over $3000 each. They are custom-built for each athlete and take 4 months to manufacture.

Last weekend, Michael finally received his chair, presented to him by Coach Debbie, and some of her San Jose City college players. Michael was ecstatic, as were his family, and now he, as the rest of his teammates at WOF, has a new lease on his sports life!

It’s not hard to see from Michael’s face how this will change his life and the lives of all who adore him. It’s a blessing that we are able to do this for him and for so many others in this program. WOF is part of Far West Wheelchair Sports, and just by going to smile.amazon.com and nominating FWWAA, you too can change a life with every purchase you make. Amazon donate part of your spend to this very worthy cause, and you don’t have to do any more other than buy your favorite items on their site.

From my past experience and the experience of those who I’ve brought into this program, we all feel that this is one of the most fulfilling and rewarding charitable causes on the planet. I hope that Michael will grow into a super Paralympic athlete, and one day make us even more proud that we helped support his growth into the fine young man I am sure he will become.

 

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