This is Josh, my intelligent, awesome, kind and loving son, He was diagnosed at 9 years of age with Duchenne Muscular Dystrophy (DMD) A severe progressive muscle wasting condition.

I was also told by the consultant over the phone that this was a life limiting condition and to enjoy the time I had left with my son & then was left processing this devastating news alone.

I had never even heard of this condition before so I did my own research via Dr Google which confirmed this condition was going to get worse overtime, that he would be in a wheelchair by 12 yrs, upper body would lose strength followed by cardiac and respiratory complications, so possibly wouldn’t see into his early 20s.

I was absolutely heartbroken, why was this happening to my beautiful baby boy?

Hours turned to Days and days into weeks, weeks into months, I felt my world was falling apart but that life was moving at 100 mph - like a roller coaster I just wanted to get off this nightmare of a ride & while this was all happening I had to solider on and try to keep things as normal as possible for Josh despite the endless hospital appointments and tests with josh being prodded, probed and moved around all the while I feeling helpless.

After these initial appointments and a muscle biopsy everything went quiet and the help I thought we would get never came. Everything became a battle .. even for the most basic things to assist josh and it is relentless. I have become an advocate, reasearcher, physio, neuromuscular specialist, counsellor, PA the list goes on..

I threw myself into fundraising for muscular dystrophy charities to help raise awareness of this devastating condition & literally threw myself out of an aeroplane to help fund a cure. We have learned to live in the moment , make lasting memories together and try not think too far ahead as it’s soul destroying.

The years since diagnosis have been incredibly difficult, I have also had to watch my son gain motor skills only to lose them. Josh does not deserve the card he’s been dealt yet he faces his condition with maturity and determination.

As DMD is a progressive condition the equipment he needs is forever changing and getting equipment out of local authority services & NHS has been virtually impossible leaving us struggling. I just want to make life a little easier for Josh by getting the vital equipment he so desperately needs, to enable him to live life to the full & to fulfil his dreams of travelling.

Thankyou so much for taking the time to read our story..

Any donations are much appreciated and will go towards the cost of the following equipment Josh needs..

Mobile/travel hoist plus carrycase IRO £2500

IGo folding powerchair IRO £1800

Wheel-able Shower/commode chair IRO £1200

Joystick module & motors for existing powerchair TBC