LITTLE Ethan McClean is a lively two-and-a-half year-old from Ballymena who functions and seems just like a standard toddler.
He loves to laugh and perform and is adored by his parents, Andrew and Yvette and big sister, Amie (12).
Ethan, however, was diagnosed last year with Muscular Dystrophy and carries a rarer type on the condition known as Duchenne Muscular Dystrophy (DMD) which affects mainly boys, happening in one in every single 3500 males.
At existing there is no treatment and no treatment for this progressive sickness which in its congenital type qualified prospects to serious muscle wasting, causing young children to become dependent on wheelchairs at a quite earlier age.
The typical life expectancy for individuals with DMD varies from late teens to earlier to mid 20s even though there have been completely reviews of a few DMD individuals surviving to their 40s.
Ethan’s dad, Andrew, describes his son as “the life and soul on the house” but, aware on the actual difficulties which lie ahead, he and his spouse currently confront this sort of dilemmas as sourcing a primary school not just on educational grounds but on no topic whether it will be wheelchair friendly for Ethan in perhaps his P6 or P7 year.
The couple’s suspicions that all was not right had been raised when by twelve months and still at 18 months their son was not crawling or even bottom shuffling.
They do not accept medical opinion at that time that he was ‘a slow starter’ but sought a next opinion – a paediatric consultant’s evaluation which was put into practice up with blood assessments and these eventually confirmed DMD.
Andrew explained that they found even more quickly just how little support for DMD sufferers and/or their families exists in Northern Ireland – “one care adviser” for that province and, in the wider UK, “one centre of excellence in England”.
Andrew and Yvette made the decision to sign as very much as Action Duchenne, a charity that is working quite difficult to achieve so very much more.
“We want to help those coming behind and we want to support the campaign for any treatment or anything that will have half a chance of enhancing Ethan’s life,” said Andrew.
“There is, for example, little or no targetted medical care and no treatment guidelines quickly to hand for that medical profession right here in relation to Duchenne Muscular Dystrophy.
“What is required is a care team that could assist Duchenne boys and it was our aim to get prior to the MLAs and then get in top of Edwin Poots to increase awareness on the need for any specialist team, not just for Duchenne but for Muscular Dystrophy generally,” said Andrew.
He and others supportive of Action Duchenne reached their audience of MLAs last month at Stormont by means of an occasion hosted by North Antrim UUP MLA Robin Swann who is completely behind the Northern Ireland campaign to end under-funding for research, medical care and support for both Duchenne and Becker Muscular Dystrophy.
Back in June, he hosted the next Action Duchenne Lobby at Stormont where families and supporters on the growing campaign gathered to encounter with MLAs which include Danny Kennedy, Joanne Dobson, Mike Nesbitte and Robin Swann who says he intends to lobby the health Minister to get more funding for research and caring amenities for those struggling with DMD.
During the afternoon parents Andrew McClean, Marina Lupari and Janet Bailie gave accounts of their personal experiences of having a child with Duchenne.
Mr Swann said: “I was personally quite moved when I listened to the stresses, strain and difficulties which these families confront on a daily basis. This circumstance goes past North Antrim and we need a campaign to assist those with DMD throughout Northern Ireland.
“It is my intention to look for a getting together with with the Stormont health Minister to see how cash can be found to fund further research into DMD. I completely support this group’s campaign to discover a treatment for this challenging condition.
“Although a lot of people have heard of other muscular disorders, DMD appears to have slipped below the radar and the awareness on the sickness and charity earnings has declined,” said Mr Swann.