Luke Mark O'Hanlon is a bright, happy and adventurous 15 month old little boy. He has just found his feet and could spend all day literally walking his mum and dad round the garden. He loves being outside and loves the water in the pool and at the beach. To look at him you would never guess that this beautiful little boy has Duchenne Muscular Dystrophy.
Duchenne Muscular Dystrophy is a heartbreaking, life limiting, progressive genetic muscle wasting condition. While the disease is rare it is the number one fatal genetic condition diagnosed in childhood. While Luke is healthy now, he will probably never be able to run, jump or climb and as he gets a little older he will fall down lots and will find it hard to get up from the floor. He will likely need to use a wheel chair by his early teens and may develop scoliosis which will mean he will need an operation to help straighten his spine. If he reaches his twenties he will need ventilation, first at night time then 24-7. His future after this is uncertain.
Luke's family love him soo much but they are heartbroken. This is the third generation of the family that has been affected by this horrible disease as Luke's uncle Mark Darragh and his 3 Great Uncles Mickey, Paddy and PJ Hampsey also suffered from Duchenne Muscular Dystrophy and all died between the ages of 16-19 years old. We are desperately hoping and praying for a cure or treatment and current research is beginning to show promising results.
The Muscular Dystrophy Campaign are working with scientists on a possible new treatment for Duchenne Muscular Dystrophy. In its most basic sense - all boys with Duchenne Muscular Dystrophy are missing 1 or more pieces of the Dystrophin Gene - This gene produces dystrophin which is essentially fuel for the muscles - Scientsts are developing a drug which they hope will 'patch' over the missing piece (s) and will mean that the gene is able to produce dystrophin. The scientists can only work on 1 piece at a time and the piece that Luke is missing will be next to be trialled. The trial may take years due to lack of funding and for boys with Duchene time is of the essence. If these new drugs work they will stop the disease from progressing but will not reverse any damage alreay done so the longer the research takes, the more chance there is that little boys like Luke will continue to die and their families will continue to endure heart ache for generations to come.
Luke's family intend to do everything they can to raise the vital funds necessary to help find a treatment for our perfect little man so that he can be with us for many years to come and can enjoy a much better quality of life than the one that awaits him now. Our first fundraising event will see Luke's Mum, Dad, his cousin Leon Daly his Uncle Damian McCaughey and a family friend, Marty Hamilton jump from a 150ft high crane and zipline the 1,000ft across the Lagan in Belfast at speeds of up to 40 mph. Sounds and looks scary but we are up to the challenge lol.
So we ask you to please dig deep. All donations big and small are greatly appreciated as every penny we raise will help to save the life of children just like Luke.
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So please dig deep and donate now.