Kanturk father Craig Coady has spoken out about a rare genetic condition that has devastated his family, calling on the Government and health authorities to approve access to a life-altering drug.
The condition, Friedreich’s ataxia, is a rare and degenerative condition that slowly robs children and young adults of coordination and muscle strength.
To make matters worse, Craig’s wife Della has Huntington’s Disease and is currently in hospital in Dublin. The rock of the family, the once-vibrant Della is now in the advanced stages of the condition, a cruel, hereditary neurological condition that slowly strips away a person’s ability to move, think, and function independently.
“It is the worst disease you can get,” Craig told The Neil Prendeville Show on Cork’s RedFM. “It’s dementia, motor neurone and Parkinson’s all in one.”
The couple very sadly lost one of their two sons, Rory, last September after he was diagnosed with Friedreich’s ataxia, which causes nerve damage and progressively damages the nervous system. In 13-year-old Rory’s case, a muscle in his heart was affected, which ultimately led to his sudden death in his sleep.
Now, Craig is facing the same heartbreaking reality with his second son, Paudie, who was diagnosed with the rare disease three-and-a half years ago.
At just 15 years old, his balance and walking ability has been affected, and his condition has deteriorated to the point where he now relies on a wheelchair. He can’t play soccer any more or hang out with friends, as the disease is progressing. He can’t write, and his speech and swallow will ultimately be affected.
“It’s incredibly difficult watching your child lose their independence piece by piece,” Craig said to Neil.
“We already lost one son. We’re doing everything we can not to lose another.”
While there is currently no cure for Friedreich’s ataxia, a drug known as Skyclarys has shown promising results in slowing the progression of the disease by up to 50%. For families like Craig’s, it represents a crucial chance to extend both quality of life and time.
While it has been approved in many countries across the world, access to the treatment remains out of reach for patients in Ireland. The Health Service Executive has not yet agreed to reimburse the cost of the drug, leaving families in limbo.
Advocates say around 200 people in Ireland are currently living with Friedreich’s ataxia, many of them children and young adults whose conditions are steadily worsening.
Campaigners are now urging the Government to intervene and approve funding for the treatment, arguing that delays could have life-altering consequences.
Families affected by the condition say they will continue to push for access to Skyclarys, hoping their voices will lead to change before more lives are lost.
“For us, this isn’t just about policy or budgets,” Craig said. “It’s about giving our children a fighting chance.”
To donate to a fundraiser for the Coady family, please check out the GoFundMe on https://www.gofundme.com/f/a-family-fighting-the-unthinkable-the-coady-family
