The family of eight-year-old Ballymena boy Ethan McClean has appealed to the community to help give him a birthday to remember.
Ethan was diagnosed with the terminal life-limiting illness Duchenne Muscular Dystrophy at the age of 18 months. Duchenne Muscular Dystrophy is a muscle wasting disorder that wastes the muscles away.
His parents Andy and Yvette McClean say: “By the age of approximately ten, it is envisaged that Ethan will require to utilise full time a manual wheelchair due to the loss of power in his legs and, by early teens, boys with Duchenne like Ethan will require the full time use of a powered wheelchair due to the loss of power in his arm muscles.
Ethan’s life expectancy is currently mid to late teens. Currently there is no cure or treatment for the variant of DMD that Ethan has. It is fatal.
“It will be Ethan’s ninth birthday on September 14 and what we would really like is to fill the house with cards for him.
”The reason we would like to do this is two fold. Firstly, the only post Ethan gets to the house is brown envelopes - medical appointments and lots of them. We would like to change his perception that the only post he will get is appointments.
“Secondly, it looks like Ethan is heading for double knee surgery late this year or early next year to have both knees plated and pinned. We know that six weeks off his feet could have serious detrimental effect on his ability to stay on his feet long term.
“Ethan’s only worry about his operation is that the Giants will see his legs in cast. Head coach Adam Keefe has not only accepted a challenge of a 5Km running race with the Team but has invited Ethan to come along and meet the Giants team.
“He’s a huge Belfast Giants fan and tries not to miss any games. The Giants and their support staff have been great helping in any way they can. Ethan’s only worry about his operation is that the Giants will see his legs in cast. Head coach Adam Keefe has not only accepted a challenge of a 5Km running race with the team but has invited Ethan to come along and meet the Giants team which Ethan is really looking forward to doing during this season. On the other hand, we think it’s another great opportunity for autograph hunting.
“Ethan’s love of sport and being outdoors also was the reason behind his family and friends helping to set up Team McClean - an assisted running team of able bodied runners pushing Ethan along in a specialist Hoyt assisted running chair.
Ethan has now “completed” in excess of 10 half marathons in two years. This was made possible by so many who helped us in raising funds to buy Ethan this chair, so he too can experience what its like to cross a finishing line. It is fantastic to see many people joining us for all or parts of the runs and walks we participate in making precious memories.
“The team participate in as many runs and walks as we can, come rain, hail, snow or sun. It was overwhelming to see Ethan’s reaction crossing the finishing line of his first half marathon in Larne, to quote Ethan in his own words when he finished “I won mummy I crossed the finish line”.
“He has really taken to the races and loves being included and seeing all the different people along the route that cheer him and the team along. These are the memories that we want to make and that will be cherished in years to come.
“If you would like to help us give Ethan a birthday to remember and show him that nice things other than just medical appointments come through the post, then please go to Facebook, like Team McClean and send us a message or drop Yvette, Andy or Amie a message via Facebook and we’ll send you our address.”