In 2018 Alex was diagnosed with a rare, life-limiting disease called Duchenne Muscular Dystrophy (DMD).
Duchenne affects all the muscles of the body, starting with the extremities of the legs and arms, leaving sufferers unable to walk from around eight years of age, or even feed themselves before it finally, and fatally, attacks the muscles of the heart. Muscles degenerate and are replaced with fatty tissue, eventually losing their ability to contract.
Alex follows a strict regime of medications and supplements, never with a complaint, and faces all his appointments head on. As well as wearing night splints and doing his stretching exercises, he also has physio appointments, doctors appointments and blood tests just to ensure he stays as he is.
“There are advances in care but the trials are almost always abroad and we are trying to raise money so that Alex can take part in those trials. We are hoping that there will be a cure,” Kate told the Limerick Post
Even outside of that, there are expenses associated with helping young Alex to get the best quality of life, like the special disability buggy which the family bought for him and which cost €1,200 even second-hand, and adjustments which need to be made at home, such as a second rail on the stairs.
“As he gets older, he will need more and more equipment,” said Kate.
Alex and his family, along with 30 supporters, last week tackled the formidable ‘Stairway to Heaven’ climb up Cuilcagh in Fermanagh, braving 450 steps to the summit and giving Alex a piggy-back up to raise funds. They raised an amazing €15,000 from that walk alone.
They have also set up a GoFundMe page entitled ‘For Alex – a fundraiser to help cure DMD’.
“Alex is an intelligent, curious, funny, kind, sweet, inventive boy who loves nothing more than figuring out how things work. He is truly remarkable and we are fighting to keep that innocent curiosity alive. We are fighting to keep this beautiful boy with us,” said Kate.
“Each day our lives are filled with dark shadows and silver linings, but when we see Alex play, or laugh uncontrollably with his brother Dean, those dark shadows are pushed further away and renews our need for a cure.”