Caithness teenager faces second life-saving operation for rare genetic condition
Register for free to read more of the latest local news. It's easy and will only take a moment.
A Caithness teenager is "a bit devastated and scared" that he has to undergo a second stem cell transplant to try to cure a rare genetic condition.
Arran Macleod, who is 13 and lives with his family at Upper Dounreay, had a life-saving operation in Glasgow in 2014 when he was just four years old.
At about the same time, his seven-year-old brother Euan had the same procedure, carried out as both boys were found to have Chronic Granulomatous Disorder (CGD).
The condition means their white blood cells have a fault which prevents them fighting infections properly. Although it is genetic, there is no history of the condition on either side of the family.
The only cure is a bone marrow transplant. CGD affects between just 250 and 280 people in the UK.
Fortunately, the Anthony Nolan Trust, which maintains a bone marrow register and matches patients and donors, has found a suitable donor for Arran and he is scheduled to get his operation next year.
Arran's mother Janet said that news was "amazing and such a relief".
"Arran feels really lucky to have a donor as so many people don't, and he wants to encourage people to sign the register to try and help others," she said. "He is a bit devastated and scared that he has to go through this again but he knows he has to and is determined to make something positive come out of his illness."
She added: "We have known for a couple of years that his donor cells were coming down. You need between 10 and 15 per cent for a viable immune system. If they go below 10 per cent you will need another transplant.
"We were desperately hoping they would stabilise but a few months ago they were at 10 per cent and by October they were down to eight per cent, so we knew then he would definitely need to have a transplant. At 10 to 15 per cent you need to be careful but you can still live a relatively normal life."
Janet said it is not really known what caused Arran's transplant to fail but it is thought to be linked to a new chemotherapy regime which was trialled as it is easier on the body. "For some kids it works fine but for others it does not, although they are not sure precisely why that is the case."
The family hopes Arran will get his operation early next summer although no date has yet been fixed for the procedure which will be undertaken in the children's wards at the Queen Elizabeth University Hospital in Glasgow.
He is expected to be there for about six weeks but his recovery, which will depend on how quickly his immune system builds up again, could take between a few months and two years. His mum and dad, Calum, will take it in turns to be with him at the hospital.
Asked how she and her husband are coping with the situation, Janet replied: "You have got to do it. It is the only hope of Arran having a life."
The teenager plays the violin in the Caithness Junior Orchestra which is run by Katrina Gordon and Susie Dingle and they have organised a couple of musical events – the first being held this weekend – to raise awareness of and funds for the Anthony Nolan Trust.
A Holly Jolly afternoon, featuring the Sunday Swing Band, is being held in the Royal Hotel in Thurso on Sunday between 2.30pm and 4.30pm, while the Caithness Orchestra's Carol Concert in St Peter's and St Andrew's Church in Thurso on December 17 will also be in support of the trust. It gets under way at 2.30pm.
Katrina said: "When we heard that Arran wanted to raise awareness of the stem cell register and raise funds for Anthony Nolan, we were just delighted to help and spread some Christmas joy along the way.
"We just want to do whatever we can to support him and his family at this time."
The Macleods are grateful to Katrina and Susie for staging these events and for the support the family has received from the community over the years.
Arran's brother Euan has stabilised after his transplant but is on medication which has caused him medical and mobility problems. He will have to be monitored for the rest of his life, although the doctors think his donor cells will stay at a reasonable level.
