Charity cycle planned for Limerick boy with rare muscle disorder
“THE WORST day of our lives, finding out that Alex had Duchenne muscular dystrophy disorder,” said Keith Higgins, stepfather of now nine-year-old Limerick boy Alex Heaney.
“From start to finish, the day we went to visit the consultant in Dublin was the worst. It was miserable weather, we ended up getting lost and then, of course, we got the life-changing news.”
Alex, from Patrickswell, just turned five when he was diagnosed with the rare genetic disorder that is Duchenne. His first diagnosis was false, as it came back negative. The second time around, the results were described as a ‘blow’ and ‘life-changing’.
The disease is characterised as causing progressive muscle degeneration and weakness due to a type of protein leaking from tears in muscles.
Kate, Alex’s mother and stepfather Keith have their friends supporting them in the form of a mammoth cycling expedition, from Orléans in France to Patrickswell, Limerick.
Fionnuala Crowe from the Ennis Road and Seán Putt, also from Patrickswell, are taking on the 872km cycle to raise money for Alex’s treatment abroad, which he previously received in Serbia.
Aiming to do the journey within two weeks, the couple are seeking sponsors, as they are currently funding their cycle expedition themselves.
“We haven’t sat on a bike in almost four years, despite training hard now. We have a planned route, but we don’t have our accommodation booked for the whole way as we will have to see how it goes day-by-day.
“My partner Seán’s nephew is Alex’s best friend.” His name is Darragh.
“They are the best of craic together. It is difficult to see Darragh and Alex together, as Darragh is not disabled in any way, but doesn’t see Alex’s disability and is just his best friend - they don’t let it hinder the craic that they still have together,” Fionnaula outlined.
Describing the simple tasks when bringing Alex anywhere outside of his home, Keith says “it would be easier to invade a country, the amount of planning that goes into any short trip”.
“Both of us have gone in and out of the depths of depression to normal life - it is a rollercoaster of emotions, all of the time.
“Even the hassle of travelling to Serbia for Alex’s treatment and lugging his wheelchair and stuff around. It can be an ordeal at times, but if any kid was going to be angry or pissed off at the world, it’s not Alex.”
Before meeting Kate and Alex, Keith had studied sports science in college and had known what Duchenne was.
Keith says when he heard the doctor in University Hospital Limerick (UHL) saying the word Duchenne for the first time, his “heart sank”, as he was aware of what the disease was from his degree.
“When I met Alex at one-year-old, it became increasingly obvious that something was wrong.
“His motor skills were delayed and he bum-shuffled a lot, rather than walking and Kate had known someone who had Duchenne - so when we heard the consultant was testing Alex for it, our hearts sank.”
However, Keith stressed that Alex is a “happy kid” and is “big into science and engineering”.
“Alex loves taking apart things and putting them back together - he is extremely intelligent, and comprehends things that he shouldn’t comprehend.
“He is really popular at school, although he can’t play sports, he also loves Man City.”
Anyone wishing to financially support Fionnuala and Seán's journey, please contact: [email protected].