Drug approval is ‘miracle’ for two brothers

The sons of a well-known local referee have hailed as a “miracle” the news that they can now avail of a drug that could help treat their Friedreich’s ataxia.

John and Bradley Stokes are the youngest sons of Longford native Willie Stokes, who is a well-known figure on the Roscommon soccer circuit as a referee for schoolboys and girls leagues.

Bradley (17) and John (19) suffer from the rare, inherited neurodegenerative disorder that primarily affects the nervous system and can lead to severe movement and coordination issues, often beginning in childhood. The boys’ family were delighted to learn that the HSE has now approved the reimbursement of the drug Skyclarys, which although not a cure will help the brothers to maintain their present levels.

Bradley was just 12 when he was diagnosed. His mother Julie explains that her son had been treated as being flat footed but despite physio his balance was disimproving. Following a medical review the family were told of the diagnosis of the illness.

The result was made all the harder as it was confirmed in 2021 during Covid with limited family members allowed into the hospital. The following year their other son John was also diagnosed, which was another huge blow to the Longford family as they truly thought he was not a carrier of the illness.

They did not tell their sons of the results straight away and it wasn’t until this year that they broke the news. Bradley, they said, was more accepting with John upset that he could one day end up in a wheelchair.

However, the family rallied round the two boys telling them they were loved and that they would be always cared for.

When news broke earlier this month that the HSE would not pass Skyclarys for reimbursement, they were left devastated. However, they prayed for a miracle and were delighted with the latest breakthrough that the boys can now receive treatment.

Although the boys have different problems with balance, gripping items and experiencing slurred speech, they hope that the drug will now slow down any further developments.

“We are hopeful and excited for the future. You never know in a couple of years they could find a cure. We prayed or a miracle and we got a miracle but this is only the start,” said Julie.