Local mum, Louise James, is set to take a great leap for charity when she jumps out of a plane at 13,000ft later this year.
Louise is just one of 35 local people who are taking part in a charity skydive in aid of Action Duchenne, to raise money for vital research into Duchenne Muscular Dystrophy.
The mum-of-two organised the event with her friend because she wanted to do something for the charity that has provided her with vital support since her five-year-old son, Evan, was diagnosed with the condition.
The lively and charming boy was diagnosed with Duchenne Muscular Dystrophy the day after his third birthday and his family’s life has been “turned upside down” since receiving the devastating news.
Duchenne Muscular Dystrophy is a severe and progressive muscle wasting disease. It almost exclusively affects young boys, who face much of their life confined to a wheelchair and without treatment will die in their late teens or early twenties.
Louise said she knew there was something wrong with her son because he was constantly falling over and behind in his milestones. However, initially physicians put the problems down to a traumatic birth.
“We were referred to the Community Development Team, based in Gransha, and it was then we received the diagnosis. I didn’t know what Duchenne Muscular Dystrophy was so my initial reaction was ‘what do we do’, only to be told to love him because he could be gone by the age of 18”.
Naturally, Louise felt a great deal of anger learning that her son will continually deteriorate as friends and other children the same age grow bigger and stronger.
“I am not a carrier so I thought ‘why him, what on earth did I do to deserve this? Why out of 5,000 boys was he the one to get it?’ But he was given to me for a reason and there are worse things happening out there. I thank my lucky stars that I have him now”.
The family take each day as it comes and Louise prays for a cure to be found, as “I don’t think I could cope with what will happen without one”.
At the moment, Evan can’t walk too far and tires easily, he falls often and finds it difficult to get comfortable. The family routine involves physio once a day which Evan dislikes and using a buggy or rollator for trips that involve a lot of walking.
The most difficult thing for Louise is that the five-year-old, who is about to begin primary school, is beginning to ask questions about the things he can’t do.
“It’s heartbreaking because how do you tell a child he can’t run. He’s started to ask why he can’t jump, run or go on the trampoline. He will try things but eventually realises that he can’t do them and that is hard”.
Louise feels very let down by the system here, which sees Evan having to go to four different places for regular appointments.
“In England there are centres of excellence which are basically a ‘one stop shop’ for people with muscular dystrophy. They can see all their consultants or physios in the one place. We have to travel to three different hospitals and to seperate physio and occupational therapy appointments. Some of these only last five or ten minutes and it’s awful. We are constantly running here, there and everywhere and life doesn’t feel your own anymore.”
Lousie cannot praise Evan’s local consultant enough and says that Dr McCord has “done more for him than any other doctor has”.
However, she has joined the fight for a centre of excellence to be established in Northern Ireland.
“A centre of excellence would cost around £5 million to set up and could be used by patients with muscular problems to get help under one roof instead of travelling to many different hospitals. It would make a huge difference.”
Action Duchenne have been “fantastic” to Louise and Evan in the last two years and “invaluable” in helping her come to terms with the diagnosis.
Louise decided that she wanted to give something back to the charity and a local representative suggested bag-packing days.
After some encouragement from a friend, Louise decided to take her money raising to the extreme and organised the skydive, but she still plans to do the bag-packing in the future.
The group of 35 aim to raise £10,000 for the charity, which was set up by parents of children with Duchenne Muscular Dystrophy and uses all donations for research into finding a cure.
To find out more, get involved or donate to Louise’s charity skydive on October 13 go to www.actionduchenne.org/stopwasting and search for Louise James. The sponsor form is also available at Great James Street Dental Practice.