Fight For Niall - Our Champion

The 5th of December 2016 is a date that we will never forget. This was the day we got the news that would change our family forever. It was the day we found out that our beautiful Niall, our nephew, son, brother, grandson and cousin, had duchenne muscular dystrophy. For those of you who don't know what this is, it is a muscle wasting disease which at the moment there is no cure for. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Without the dystrophin, the muscles deteriorate gradually. This usually starts with weakness in the pelvis/legs and will then move onto the arms, torso and eventually the heart and lungs. You can expect children with duchenne to be in a wheelchair by age 8-10. In most cases it is during the teen years when the most significant loss of muscle strength occurs. It is at this point that activities involving the arms, legs, or trunk of the body will require even more assistance. Although most boys will retain the use of their fingers thus allowing them to write, use a computer, and operate a power wheelchair, it is at this stage that the muscles in the heart and lungs become vulnerable. Heart and respiratory complications become the main threat to those with Duchenne. The life expectancy for those with duchenne is around 30 years old. Niall was our wee miracle. My sister Louise and brother in law Mark were so lucky to be blessed with him. On the 16th of September 2013 I was there to watch a much longed for baby boy be born, weighing 8lb 11oz and with a head of gorgeous dark hair. One of the most special moments of my life was watching my sister bring him into the world. We never thought for one second something like this would be lying ahead of us. He is the firecracker in our family, the most cheeky, funny, mischievous wee boy you could ever meet. He would put a smile on anyone's face. My sister first noticed that Niall struggled with getting himself up from the floor at around 18 months, he was sent for physio and at that time it was nothing to worry about. As time went on, he struggled going up and down stairs, he found it difficult to run, to get up off the floor and couldn't jump very well. This became more noticeable when he was playing with his younger cousins. He was referred for tests aged 3, which then led to his diagnosis. It's hard to put into words the devastation I felt when I heard my sister say those words to me. I was heartbroken in so many ways, but we can't break down, we have to stay strong for each other and we have to fight. We have to be ready for any trials coming up for the type of Duchenne that Niall has which can come at a great expense. There will also be a lot of things needed for short and long term care which won't all be funded. Things to keep him as independent as we can for as long possible, aids to help him around the home and in time things like a motorised wheelchair, hoists, home adaptions and other essentials to make things as comfortable as possible for him. I for one want to make sure that while my sister and brother in law are facing this long road ahead, they need not worry about the financial side of things. Any donations not used towards Nialls treatments or needs will all be passed onto associated UK Duchenne charities to help the research into finding a cure for this devastating disease. Please give what you can and if you aren't able to donate, we would be so grateful if you could share Nialls story. Thank you. Please check out Nialls Facebook page for updates on our upcoming fundraising events. https://m.facebook.com/FightForNiall/