Toddler Ethan inspires a local family’s drive to raise public awareness of DMD

LITTLE Ethan McClean is a lively two-and-a-half year-old from Ballymena who acts and appears just like a typical toddler.

He loves to laugh and play and is adored by his parents, Andrew and Yvette and big sister, Amie (12).

Ethan, however, was diagnosed last year with Muscular Dystrophy and has a rarer form of the condition called Duchenne Muscular Dystrophy (DMD) which affects mainly boys, occurring in one in every 3500 males.

Hide Ad
Hide Ad

At present there is no treatment and no cure for this progressive disease which in its congenital form leads to severe muscle wasting, causing children to become dependent on wheelchairs at a very early age.

The average life expectancy for patients with DMD varies from late teens to early to mid 20s although there have been reports of a few DMD patients surviving to their 40s.

Ethan’s dad, Andrew, describes his son as “the life and soul of the house” but, aware of the physical difficulties which lie ahead, he and his wife currently face such dilemmas as sourcing a primary school not just on academic grounds but on whether it will be wheelchair friendly for Ethan in perhaps his P6 or P7 year.

The couple’s suspicions that all was not right were raised when by 12 months and still at 18 months their son was not crawling or even bottom shuffling.

Hide Ad
Hide Ad

They did not accept medical opinion at that time that he was ‘a slow starter’ but sought a second opinion - a paediatric consultant’s review which was followed up with blood tests and these eventually confirmed DMD.

Andrew explained that they discovered even more quickly just how little support for DMD sufferers and/or their families exists in Northern Ireland - “one care adviser” for the province and, in the wider UK, “one centre of excellence in England”.

Andrew and Yvette decided to sign up to Action Duchenne, a charity which is working very hard to achieve so much more.

“We want to help those coming behind and we want to support the campaign for a cure or anything that will have half a chance of improving Ethan’s life,” said Andrew.

Hide Ad
Hide Ad

“There is, for example, little or no targetted medical care and no treatment guidelines immediately to hand for the medical profession here in relation to Duchenne Muscular Dystrophy.

“What is needed is a care team that could assist Duchenne boys and it was our aim to get before the MLAs and then get in front of Edwin Poots to raise awareness of the need for a 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 via an event hosted by North Antrim UUP MLA Robin Swann who is fully 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 second Action Duchenne Lobby at Stormont where families and supporters of the growing campaign gathered to meet with MLAs including 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 facilities for those suffering from DMD.

Hide Ad
Hide Ad

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 very moved when I listened to the stresses, strain and difficulties which these families face on a daily basis. This situation goes beyond North Antrim and we need a campaign to assist those with DMD throughout Northern Ireland.

“It is my intention to seek a meeting with the Stormont Health Minister to see how cash can be found to fund further research into DMD. I fully support this group’s campaign to find a cure for this challenging condition.

“Although many people have heard of other muscular disorders, DMD seems to have slipped under the radar and the awareness of the disease and charity income has declined,” said Mr Swann.

Hide Ad
Hide Ad

“Action Duchenne is working hard throughout all the U.K to provide more awareness for the disease and raise money to help research. If you would like to get involved with fundraising and campaigning for DMD in Northern Ireland please contact Eilidh by emailing, [email protected] or visiting http://www.actionduchenne.org/home,” said Mr Swann.