Treatment for our son’s life-limiting illness could be so much better... but there’s no one in Stormont to push through changes
A Limavady woman whose 10-year-old son has a rare form of muscular dystrophy has said health trusts need to put better structures in place to help people with the condition.
Laura McCorriston's son Callum was just 15 months old when he was diagnosed with Duchenne muscular dystrophy, which limits life to an average of 17 years.
The majority of children diagnosed with Duchenne are boys, and an average of four boys a year will be born with the degenerative condition in Northern Ireland.
Children with Duchenne see a number of medical consultants as part of their care needs, but unlike children in England, who visit all their consultants on the same day at Great Ormond Street Hospital, appointments here are spread out across the year and at different hospitals.
Ms McCorriston said adopting a system like Great Ormond Street's in Northern Ireland would be less traumatic for children and their parents.
Speaking to the Belfast Telegraph to mark Duchenne Awareness Day on September 7, Ms McCorriston said the day she and her partner Paul were told Callum had the condition was the day their lives changed forever.
"When Callum was 15 months old, the health visitor called out for a routine check-up and because Callum wasn't walking she suggested referring him for some physiotherapy," she said.
"The physiotherapist referred him to a paediatrician, who then did some blood tests and told us we should have the results within two weeks.
"The next day the paediatrician phoned us and told us she was coming out to visit us.
"My first thought was that Callum had leukaemia because they had checked his blood, so when she said Duchenne muscular dystrophy, I initially felt relief that it wasn't cancer, not realising how severe it was going to be.
"I remember I was feeding Callum at the time, but I kept looking at the paediatrician and asking, 'Is he going to die, when is he going to die, what age will he be?'
"Our lives changed that day. It was awful and not something we expected we would ever have to face.
"Paul and I had already decided that I would be a stay-at-home-mother, but I went from someone who worked part-time in a pet shop to a woman who had to learn all she could about Duchenne.
"Duchenne is a rare form of muscular dystrophy that affects almost always boys.
"(People with the condition) have an average lifespan of 17 years and sadly that is a very real part of our lives.
"We know what most other parents don't - that our time with Callum is limited. It is precious and that has taught us to appreciate that time. Callum is becoming more aware, but we deliberately try to protect him from knowing what lies ahead, but it is so, so hard when he asks, 'Mummy, why do I have sore legs?'."
Multiple hospital appointments have become part of life for Callum and his family, but Ms McCorriston said this could be improved to make life easier for her son and the other children in Northern Ireland with Duchenne.
"We had been in Stormont lobbying for standards of care, but Stormont isn't sitting, so we don't have much chance of that happening," she added.
"The standards of care they have in the rest of the UK are so much better.
"Callum sees a paediatrician, a neurologist, a cardiologist and the respiratory team, but all his appointments are spread over different days and over different hospitals. However, children in England with Duchenne see all their specialists on the same day at the Great Ormond Street.
"We are so glad that Callum is receiving the care he does, but if there was a system in place here in Northern Ireland like there is England, life would be that bit easier."
Ms McCorriston said that while Callum was reaching an age where he is more aware and accepting, people staring at him does make him unhappy.
"I know a lot of people may not have even heard of Duchenne - and that's the point of the awareness day - but too often people just stare at Callum when they see him in his wheelchair," she added.
"This is something that bothers him so much. We try and minimise his discomfort by telling him they are looking at him because he is so handsome.
"However, it would make such a difference if rather that staring at Callum, or indeed any child in a wheelchair, people waved or stopped to say hello."