The parents of a five-year-old boy battling a terminal condition have been left crushed after their bid for potentially life-extending treatment in the US fell through.
Jamie Tierney Jr, from Dunfermline, was diagnosed with Duchenne muscular dystrophy (DMD) in March 2022.
The muscle-wasting disease, for which there is no cure, affects one in 5,000 boys and gradually weakens all muscles in the body, impacting the heart, lungs, and brain, with a life expectancy typically reaching the mid-20s.
For the last two years, Jamie Jnr’s parents, Jamie Snr and Bobbie, both 32, have tirelessly raised funds to send their son for a £2.6m gene therapy treatment in America.
The family had hoped the radical treatments could be the breakthrough they were searching for and help slow the progression of Jamie’s disease.
However, after months of research, the Tierney family made the difficult decision to abandon their efforts to raise the enormous sum.
Jamie Snr said: “We’ve had to abandon plans to try and get Jamie on the £2.6m gene therapy treatment programme.
“The more we researched patients’ results, the more unhappy we became.
“The results did not warrant the figure being quoted.
“Jamie has just started p1. We had hoped a treatment plan was coming sooner than later.
“We are devastated.”
The family travelled to the US and Mexico in search of alternative therapies during summer this year. They found a specialist treatment in Texas to improve Jamie’s circulation which is now part of his daily routine before school.
His parents say they will continue to fundraise cash as they hope to explore more advanced medical treatments abroad to buy their son more time.
Jamie Snr continued: “We need to raise £60,000 a year to cover his annual gene therapy treatments abroad. It’s never-ending.
“The world is evolving every day. It’s all about finding something that’s safe and pain-free. I would never put Jamie through any pain or harm.”
He previously told the Record: “The NHS told us there was nothing for us to do to help him. They handed us a leaflet explaining he would likely be in a wheelchair come age eight and will probably not live past his late teens. You can’t imagine how distraught we were.
“After tones of research we found British families travelling abroad for stem cell treatment.
“What we are doing isn’t a cure but we’ve seen it work miracles with other kids. There is a wee boy in Ireland that has been doing the treatment for five years or so and at 10 years old he can run up and down stairs. The NHS told us to expect Jamie to be in a wheelchair by then.”
Despite their struggles, the Tierney family have received overwhelming support through their fundraisers, and their annual charity ball on October 26 has sold out for the third year in a row. However, the couple have found that securing auction prizes for the event at the Glen Pavilion in Dunfermline has been more difficult as the cost of living crisis bites.
Jamie Snr said: “We’ll take donations right up until the day. It means the world to us if people just share Jamie’s story. If we can raise awareness of his journey then it could potentially help or provide hope to other families going through similar things.”
NHS Fife said: “We work to ensure that every patient in Fife has access to the most clinically effective treatments available. Where there are treatments for conditions not available locally, there are processes to consider requests for such treatments where there is strong evidence that it will provide clinical benefit to the patient.”
To donate, visit Wee Jamie’s Journey on facebook and GoFundMe.
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