MY SON HAS DUCHENNE MUSCULAR DYSTROPHY

Without doubt is the hardest things I have ever had to hear and took me a long time to say. Learning your child has a life limiting disorder is something no parent should have to go through.

I am hoping our story will encourage you to help me help my Son.

Let me start at the beginning.

Ioan was born a normal happy baby and in the early years everything was perfect, a smiley boy with a cheeky but loveable character. As time went on I had concerns and to cut a long story short a few visits to our GP and a referral to a specialist brought the shattering news that my son had Duchenne Muscular Dystrophy (DMD), having never even heard of it I was in total shock but knew this would take our family on journey we didn’t want to travel.

Duchenne muscular dystrophy (DMD) is a genetic disorder characterised by progressive muscle degeneration and weakness. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls. Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing. Survival into the early 30s is becoming more common.

To say that its been a tough road for Ioan and our family would be an understatement, but my primary goal is to ensure that Ioan has the best life possible, most people have a life time to action a ‘bucket list’ sadly Ioan doesn’t so we have really worked hard to get him as many enjoyable and interesting experiences he can and while he could enjoy them properly.

Very sadly, we are now at the point of degeneration where Ioan has lost the use of his legs and we are having to use a wheelchair, hence the reason for this appeal. The chair we have is one provided and doesn’t really meet Ioans needs, its cumbersome and awkward as well as not being very ‘cool’ for a ten-year-old. Ioan your usual ten-year-old, he loves to play Minecraft, watch YouTube videos and DVDs, and I really want what time he has be as enjoyable and easy as possible.

A successful appeal for equipment will make a HUGE positive impact on Ioans life as it will mean that Ioans condition does not dictate where he can go when out with family and friends, it will give independence and confidence.

Some of the equipment is nothing short of amazing and to a disabled child would be miraculous and, in a day, where social media exposure and crowdfunding is the norm, I am appealing to your humanity to help me raise the funds to give my Son the best life I can. No matter how small the contribution is I will be eternally grateful, and it will be a step towards our target. Thank you for taking the time to read Ioans story and I really hope together we can change his life for the better. #teamioan