LEONA Connolly’s voice fades when you ask what her hopes and dreams are for her 14-year-old son Croistái, who suffers from the life-limiting Duchenne Muscular Dystrophy.
“The dream for Croistái is for him to be as happy and as healthy as he possibly can,” his mother says.
“To give him the best life we can possibly give him, to live a happy life. What more do you want for your children?
“I want him to have the chance to experience things that he wouldn’t get to experience if he wasn’t getting this treatment.”
The Loughgiel Shamrocks family, and seemingly the entire Antrim GAA community, are in the throes of a major £50k fundraising drive to get Croistái to America for more new, regenerative treatment, which has made a dramatic impact on the quality of his life.
Earlier this week, GAA stars Neil McManus and Conor Glass joined Croistái’s campaign to help get him Stateside again.
“Croistai has DMD, a muscle wasting condition,” said Antrim hurler McManus.
“He has been wheelchair dependent since he was nine-years-old and his condition deteriorated until finding treatment in the USA. This treatment gives Croistái the chance of life.
“Let’s raise £50k together to help the youngest child of this GAA family. This is Croistái’s chance - but it’s up to us.”
The only boy among four siblings, parents Art and Leona discovered Croistai had Duchenne Muscular Dystrophy at the age of five.
Months after the life-changing diagnosis, Croistai’s parents were in “shock and denial”.
“When Croistái was born we were told he was perfectly healthy, but I just had this feeling that something was not right,” Leona says.
“He had very muscly legs, which is common in people with this illness. We just thought he was a big strong boy and we were thinking: ‘Wow, he’s gonna be a great hurler when he grows up and be so sporty, like his father.’
"But he was constantly falling and banging his head. Mentally, he was absolutely fine. But physically something wasn’t right. He couldn’t ride a bicycle; he could never pedal or climb.”
She adds: “When he was younger, Croistái was able to walk, he was able to run. Gradually, by the time he was nine, he told me one day he didn’t want to walk anymore because it was just too hard for him. He was getting so weak and kept falling. He broke his arm at one stage and fractured his hip another time.”
With the future looking desperately bleak for Croistái, a chance Facebook search gave the Connolly family hope.
The Pentony family from Newry established the “Fight for Alfie” charity – whose son had been diagnosed with the same debilitating illness, but they had discovered new, revolutionary treatment for Duchenne Muscular Dystrophy in Pennsylvania.
The ongoing treatment has had a transformative effect on Alfie's life.
With the help of the GAA community and beyond, Croistái’s parents raised enough money for their son to have two treatments over the last six months.
“We have been absolutely blown away by the treatment,” Leona says. “Croistái’s breathing has completely changed. Before he went to America for the first time (October 2021), the respiratory team were talking about giving him breathing apparatus to help him at night.
“From the very first night of his treatment, his breathing completely changed. Croistái would have had shallow breathing.
“He would have been very pale but his colour completely changed. I spent the whole night just watching him. I was thinking: ‘Am I seeing this because I want to, or am I seeing it because it’s actually happening?’
“His muscles in his legs have loosened up, whereas before they would have been very tight. He’s able to move his legs, he can lift his arms above his head which he wasn’t able to do.
“He was starting to lose the strength in his upper body because your lungs and diaphragm begin to weaken. He has regained upper body strength and his personality has even changed because he would have been very, very shy, hated school and now he gets up every morning, bright as a button, can’t wait to go to school, and his confidence has gone through the roof.”
For Croistái to continue to receive this life-changing treatment the Connolly family must raise £1,000 per week, hence the fundraising plea.
“Croistái’s treatment alone costs $11,800 and that doesn’t include flights, trains or hotels.”
Leona heaped praise on the teaching staff at Cross & Passion College, Ballycastle and the entire GAA community and beyond for their “phenomenal support”.
“I need to say that I did everything possible for Croistái. If we hadn’t taken him to America, I could never have said that.”
GoFundMe, 'Life-changing' treatment for Criostái - https://gofund.me/f008b699
