Help needed!

Can't believe joey is 15 on Monday and I am 45., it's been almost 14 years since he was diagnosed with Duchenne Muscular dystrophy. For the 1st time due to corona I really feel everyone can relate to our worse fear about your child or loved one getting sick and dying of a disease. Duchenne is a progressive muscle wasting illness.. its fatal.

I never in my wildest dreams, thought Joey would be walking at 15, though assisted at times with his wheelchair, not many see his struggles, but so proud the way he deals with everything.

 I feel blessed everyday for this and that he is still with us, full of life and brings so much joy into our lives. I have said goodbye and seen so many in the duchenne community leave us.

I know what the future according to current medical science will bring... I am asking you to help change that.

Joey has been trying to walk 3k over the last 2 weeks which believe me is a massive challenge for him. As it's our birthday monday the best present we could ask for is a viable treatment for duchenne which we are so close to. Knowing trailsare happening gives him the gift of hope, he needs it as he is aware of all the outcomes of Duchenne.

Please could you sponsor him, all money will be going towards trials to that could lead to a treatment for Joey and those with Duchenne .


I took the post below from a parent who can give you an insite to life to what live is or will be like for those with Duchenne.. 



Imagine

Imagine being sat in a chair, while you watch other people walk around......

Imagine going to the beach, being stuck on the sea wall, unless they have specialist wheelchair access, watching everyone else having fun on the sand and in the sea, and you can't do this because you're stuck in a chair...........

Imagine seeing all the fair ground rides, and people screaming and having fun, and you can't do this because you're stuck in a chair or don’t reach the height requirements and your younger sibling does

Imagine people walking round eating ice cream without a care in the world, while you can't hold an ice cream, because your arms no longer work or your fingers can’t grip.....

Imagine having an itch that needs scratching, but you can't unless you ask someone to do it for you.........

Imagine going out for dinner, and knowing everyone is watching as you're struggling to feed yourself but that last bit of independance you have left leads you to get that food to your mouth in the weirdest way, but its acheivable for now, but not much longer, and you know it wont be long before you have to be fed in public, then peope really will stare..........

Imagine watching others giving each other a hug, knowing you can't do that anymore...........

Imagine seeing dogs on the street, who are loveable and all you want to do is stroke them, because this is your passion, but the dog is scared of your chair, and too big to be lifted to you, so you have to watch while others get to stroke it, while you desperately want to ..............

Imagine having to be washed, and dressed while you just lay there wishing you could do all this yourself at your age.......

Imagine someone else cleaning your teeth for you , sometimes catching your gums and hurting, while you wish you could just do it............

Imagine having to have help when you need the toilet, all the while wishing you had your own privacy to be able to do this yourself..........

Imagine going to bed at night, asking someone to get your legs this way, your arms that way, while wishing they would just move for you ...........

Imagine at 12 years old, you still have to have a baby monitor and call out through the night for your body that will no longer work to be put into another position, when all you want is to not have to call for help and do it yourself.......

These are just a few examples of what will run through a childs head with Duchenne .............

Just take one day, and put yourself in this position, you wouldnt want to would you..........
So why should our loved ones have to..............

If this upsets you, imagine how they feel every day! Next time you're doing one of these things, imagine if you couldn't do it.............

Duchenne UK is a highly focused, ambitious and lean charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy (DMD). DMD is a devastating muscle wasting disease and is the most common genetic killer of children worldwide. There is no treatment or cure. Children will be totally paralysed by their teens and won’t live beyond their 20s.