Stevie Lee Pearson

12.12.1992

 

Thank you for taking an interest in our son Stevie.

 

At the age of four Stevie was diagnosed with a dehibilitating rare muscle wasting disease called Duchenne muscular dystrophy. Now aged 16 Stevie has been through so much for such a young lad. He acquired his first wheelchair when he was just seven, as he was finding walking more and more difficult, during that period of his life Stevie would fall down to the floor a lot as his legs no longer had the strength to keep up with his peers, this was a really hard time for him. At nine years old his legs became to weak and needed medical intervention in the form of an operation to re-hibillitate Stevie into long leg callipers, to everyone’s amazement he really took to these and managed to continue walking for another two years, he was a little unsteady and much slower than normal nine year olds! But he was still able to move around independently.

 

In January 2003 Stevie got up for school as normal one morning and realised overnight that his body had lost the ability to continue walking. He didn’t feel safe anymore, and sadly the decision was made that Stevie would never be able to walk again. We put his callipers up in the loft and set about consoling our distraught little boy. He was just 11 years old….. This transition in Stevies disease meant he would spend the rest of his life in a powered wheelchair.

 

How on earth do you begin to come to terms with something as devastating as that? We as parents have struggled emotionally to except that there is nothing we can do to stop what is happening to our son. Instead we try as a family to remain positive provide as much support and love as possible, and to always encourage Stevie to embrace life and to take each day as it comes. We encourage Stevie to be confident and to be proud of his achievements and also to try to accept and adapt to the changes and hard times when they are upon him.

 

This kind of attitude has helped Stevie through the years and the different changes he has had to cope with. He has recently taken G.C.S.E exams. He hopes to go on to further Education at a specialist college to do A-levels in Media, Sport and Photography.

 

Stevie is a very happy, content, intelligent young man, who really is an inspiration to all that meet him. As far back as we can remember he has always had a football at his feet. Even now in his powered wheelchair he is football mad! He can tell you all you need to know about the current leagues and top goal scorers etc.  He is a massive Arsenal fan, but also has a big interest in his local side Watford, where he is a well-known face as a season ticket holder.

 

Stevies main love is Powerchair football, a fairly new sport to powerchair users. He started playing four years ago after he stopped walking and hasn’t looked back since. To date he has represented England twice, once in Atlanta, in summer 2006 and this October he flew to Tokyo, Japan to compete in the first ever Powerchair World Cup as part of the England squad. (For more information on Stevie and his Powerchair football please visit Thewfa.org.uk) He is England’s top goal scorer for 2 years running, and has such talent and passion for this sport. His local team ASPIRE based at Stanmore have just won the National League for the second year running.

 

Fundraising for Stevie is a never-ending battle to ensure we can give him the very best quality of life; we are continually fundraising for life enhancing equipment that is not always available on the NHS. At present Stevies spine is showing the onset of scoliosis (curvature of the spine) and his heart muscle is becoming weaker due to his condition. His chest and lungs are weaker leaving him very susceptible to pneumonia and respiratory infections. His arms and upper trunk muscles are weakening and will soon loose their function and ability, leaving Stevie unable to write, feed himself, brush his teeth and all the other self help skills we all take for granted. Although some medication for his heart can help delay certain symptoms, sadly as yet there is no cure for Duchenne Muscular Dystrophy.

 

Stevie’s life expectancy is tragically limited, this is why we are always striving to do anything and everything that we can, we always want to be able to offer him the best quality of life, whilst he is still able to benefit. Time is precious and the fundraising is never ending.

  

Any financial help that charities/business’ are able to offer Stevie is always gratefully received. The cost of maintaining his Balder Powered Wheelchair (that we funded ourselves in 2003) can run into hundreds each year. Maintaining the yearly service and repair costs on his equipment at home (hoists, Electric bed, closomat toilet, etc) also eat into the family budget. Although we are both working parents, the expense of living with a disability is at times a huge strain, but a necessity to give Stevie as much independence and a standard of living that we all take for granted. 

 

We are so very proud of Stevie; he is a funny, talented, courageous young man. He is a wonderful example to his 2 younger brothers Ben aged 9, and Joshua aged 3. We really do feel extremely lucky to have him as our son and hope to continue the fight against Duchenne Muscular Dystrophy.

Once again thank you for your interest, if you require any further information please don’t hesitate to contact us. If you can help in anyway either by buying a ticket to our second Charity Ball Friday 9th October Sopwell House, or donating a fabulous raffle prize your help is very much needed and will be gratefully received.

 

iKind regards

 

Steve and Angela Pearson

click on pics to enlarge

Stevie leading the team for the opening ceremony in Japan 08

 With his good mate Johnny

  At Watford with Grandad

 Stevie centre parcs

 Mascot at Watford fc age 6

Winning First National league 06/07

Playing golf, after Stevie had his op to wear callipers (aged 11)

Side view of Balder

Stevie at 3

Stevie in Japan

More photo's