Joe was disgnosed with Duchenne Muscular Dystrophy in 2007 aged 5. We had never even heard of it, but once we knew what it meant our hearts broke and our world came crashing down around us. You see our beautiful, funny, smart child was poorly and he would never get better.
Most children with Duchenne lose the ability to walk by the age of 12, then the rest of their body starts to fail. Before long they can no longer raise their arms to feed themsleves or to give you a hug. By mid teens they are usually having to use ventilators to breathe and using machines to help them cough. Then they get probelms with their heart and lungs and they become too weak to fight anymore. There is no treatments or cure, so we watch as our child deteriorates by the day, knowing there is nothing we can do about it.
From day one we have had a battle with the authorities to fund equipment, to seek suitable accomodation, to get the right school for him, to find funds to get a vehicle that can take his wheelchair. Its has been horrendous, soul destroying and incredibly expensive. It was made all the worse in Feb 2015, when Joe fell and fractured his spine. Life drastucally changed over night as he went from being able to walk, in the house, to no longer being able to walk at all and now has to rely on us, for everything.... To dress him, to pick things up he has dropped, to help him go to the toilet, to scratch an itch, to clean him, to bathe him and some times feed him when the fatigue sets in and he just doesnt have the strength. He was 12 when this happened.
Yet, despite his illness, Joe continues to smile and continues to be a rainbow in our thundery skies. He deserves to be able to live in a home where he feels comfortable, where he knows he is safe and can move freely, where there is the equipment to support his failing body with out being afraid his parents are going to drop him because we have to lift him. He deserves to be able to get out and about not be house bound. He deserves a happy life. He deserves the best life... before it's too late.
Please, please help to fund for the life changing equipment Joe needs.
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