Meet Joe...(copy and paste the link to view) https://vimeo.com/256913593

On 14th March 2007, when Joe was just 5, he was diagnosed with Duchenne Muscular Dystrophy (DMD). The Neurologist who diagnosed him said; “Your son has Duchenne Muscular Dystrophy. Here is a leaflet about steroids. Take him home. Love him” ....he then left.

We had no idea what DMD was. Dr Google told us that it is a fatal muscle wasting disorder affecting 1 in 3,500 boys (in rare cases, girls can be affected, too). We learnt Joe's muscles were on borrowed time. They would weaken and he would fall a lot. By the age of 10-12 he would stop walking and would need to use a wheelchair. By his teens, his upper body would lose strength and he probably wouldn’t see his 20s due to cardiac and respiratory complications. Game over.

How could this be happening? Why our beautiful boy? Our our hearts broke.

Days turned in to weeks and weeks in to months. It was a blur. We went from one hospital appointment to another. Physios, Occupational therapists, Neurologists, Speech Therapists, Educational Psychologists, SENCOs…. People prodding at Joe, testing his strength, making videos, filling in charts and the questions...So.Many.Questions! Stop the world we want to get off!... and while all this was happening, we still had to soldier on keeping things as normal as possible for this little boy, who didn’t have a clue what was going on.

We learnt pretty fast, that after those initial appointments, things go quiet. VERY QUIET and the help we thought we would get became non existent. Everything became a fight - even for the most basic things ...and it is relentless. We started to busy ourselves with fundraising for some of the bigger Charities but when we needed some support, they failed us. At this point we decided to set up our own Trust and Hope for Joe was born. We now fundraise solely for the equipment and respite Joe desperately needs.

In 2010 we were dealt another blow. Joe was diagnosed with Aspergers, Attention Deficit Disorder, Sensory Processing Disorder and early onset Osteoporosis, which would ultimately be the thing to take him off his feet, for good. In 2014, whilst picking up some Lego, Joe fell and fractured his spine in several places. He stopped walking pretty much over night and we were thrown in to chaos.

We are now a family in crisis, in a virtually unadapted house and despite our best efforts, getting nowhere fast and with no one in our corner fighting with us.

The last 11 years have been incredibly hard. We’ve have seen our boy gain motor skills only to have them taken away and the devastation it causes.

We’ve become masters in Duchenne. We are advocates, researchers, nurses, physios, psychologists, neuromuscular specialists, counsellors, PAs. The list is endless. We’ve learnt not to sweat the small stuff. We live in the now and try not to think too far a head because it’s soul destroying to even go there.

Joe is an awesome young man. He doesn’t deserve the hand he has been dealt but he faces his condition with such grace, determination and maturity. We just want to make life a little easier for him and to be able to provide the equipment he needs to make a difference, while we still have him.

As Duchenne is a progressive condition, equipment and space needs adapting or replacing regularly. There is always something he needs or something will happen that makes us think “if only we had x,y or z” and getting that out of local services or the NHS has been incredibly long winded, or, just doesn’t happen, leaving us struggling.

Thank you so much for taking the time to read about Joe and for your support in giving Joe a better tomorrow. We appreciate it so much.

Annette and The Hope for Joe Team XxXxX

Below, is an idea of some of the things we need. The list is added to as soon as we know what else will be required, usually when the condition deteriorates. There will also be a new set of needs when he starts college in September.

A lot of the equipment Joe needs is very much dependent on a MODULAR ADAPTED POD we are supposed to be getting, which attaches to the back of the house. I say "supposed" because discussions about this POD started 4 years ago when Joe fractured his spine and we are still waiting! Should it go ahead, he will need space saving and wheelchair adapted furniture for the bedroom and Wheelchair accessible outside space, too.

For now, the things we need are:

1) Wheelchair Accessible Van. The basic model is £13,000. Total down payment is £20,000 Then there's the conversion and adaptations on top, for example....

£3250 Lowered floor with lowering suspension

£755 Powered side doors

£835 Tri-zone climate control (Joe cant regulate his own body temperature so this helps to do that)

£510 Wheelchair position with electric front belts

2) £264.65 Flexi Mug, holders and bed shelf. Needs shipping in from USA THIS HAS NOW BEEN PURCHASED! THANK YOU!

3) £291.60 Promove Sling and Accessories

4) IRO £1125 Tilt in space shower chair

5) IRO £700 Body dryer for after showering (see above re: body temp regulation)

6) £400-700 mattress for Turning bed, the bed is approx £8,900

After equipment, there is also respite needs:

£120 1 night stay at Treloars School In Alton

£120 1 week at Woodlarks Farnham. THIS HAS BEEN PAID FOR. THANK YOU!

£500 1 week at Calvert Trust in Exmoor if he goes with school, £1500 if he goes alone. THIS HAS BEEN PAID FOR. THANK YOU.