Improving the quality of life for DMD sufferer

My son (Wes) has Duchenne Muscular Dystrophy (DMD), which is a muscle wasting, life limiting condition, diagnosed when he was four years old.  Due to the nature of DMD which is a progressive muscle wasting condition, severe cardiomyopathy has now also been diagnosed.

Until recently the life expectancy for a child diagnosed with DMD was limited to teenage years.  Thanks to the advances in medical science and complex medication regimes this expectancy has been delayed, although there is no concrete evidence for how long. He is now 21 years old.

Wes is a full time powered wheelchair user.  He needs a specialised joystick to operate his wheelchair which is NOT funded under the NHS, their solution is to adapt his wheelchair and move the controller to the back and us or a carer to drive him around and that will take away the last of his independence.  The cost of the said joystick is £1495, that is without the cost of call out and fitting charge.  Driving his powered wheelchair is the one thing he can do independently, but lately even this task is becoming more difficult.  This new joystick will help prolong his ability to control his wheelchair independently.

Wes needs help with everything from washing him, getting him up in the morning, dressing him, putting him to bed. Even having to be fed his food and drink. That is the reality of Duchenne Muscular Dystrophy. Imagine losing the ability to do all these things for yourself. 

The funds would be utilised as described above to improve Weslie's independence.  If there are any funds left after sourcing the joystick Wes hasn't had a holiday with his immediate family abroad since 2010, due to the extra costs involved in travelling abroad with a disability.  It would be a bonus if we could achieve this also, although this isn't the main priority.   If we are lucky enough to raise more money than needed then the remainder would be donated to a Duchenne charity based in the UK. 

Any donations will be greatly appreciated and make Wes independent for longer.  Not to mention Wes being able soak up some much need vitamin D, if we succeed in our secondary priority.
  • Katie Bradbury 
    • £15 
    • 22 mos
  • Anonymous 
    • £500 
    • 22 mos
  • Rubem Barbosa-Hughes  
    • £10 
    • 23 mos
  • Nicole Carlyle  
    • £10 
    • 23 mos
  • Allison Shaw 
    • £40 
    • 23 mos
See all

Organizer and beneficiary

Kelli Smith 
Stevenage, East of England, United Kingdom
Weslie Gray