The dad of a four-year-old with a terminal condition has begged Scots health chiefs to offer a radical foreign treatment which can help his son.
Jamie Tierney Jr was diagnosed with Duchenne Muscular Dystrophy (DMD) last March and his family are now fundraising to send him to stem cell clinics in the US and South America to potentially extend his life and hold back his symptoms.
The muscle-wasting disease is found mainly in boys, affecting approximately one in 5000 births where all muscles in the body, including the lungs, heart and brain, are impacted. The family, from Dunfermline, were told that James would deteriorate in front of their eyes, with the average life expectancy in the mid-20s.
Despite there being no known cure, mum Bobbie, 30, and dad Jamie, 31, have fought to find alternative treatments to save their son’s life which led them to the specialised stem cell treatment, which costs £60,000 a year.
His dad said: “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 tons of research, we found families from Ireland and England were travelling abroad for stem cell treatment. This led us to Colombia on his first two treatments, with New York being our most recent venture.
“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.”
Each treatment session costs £20,000 and it needs to be done three times a year, with the family relying on fundraisers – like the Kiltwalk that raised £17,000.
The Celtic-daft family have also been helped by Hoops podcast A Celtic State Of Mind, which donated money from shows. However, the youngster’s joiner dad and bank worker mum constantly worry about the cost of the next treatment and have pleaded with NHS chiefs to offer a solution.
Jamie added: “It’s madness that we can’t get it here. We would be willing to pay and have contacted everyone because it is not a difficult treatment to give. The response is always that there is no evidence the treatment works for kids with DMD. Families are seeing results across the world.”
The Scottish Government said: “We are investing £4.5million over five years to ensure those with a neuro-logical condition such as Muscular Dystrophy can access the care and support they need to live well, on their own terms.
"We’d encourage Mr Tierney to discuss his concerns with Jamie’s paediatric neurologist in Edinburgh to ensure Jamie has access to the full range of multi-disciplinary treatment and support available.”
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.”
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