Parents’ joy as marrow donors found for brothers
TWO Caithness brothers who have a rare genetic condition could soon get life-saving transplant operations.
That emerged this week after bone marrow donors were found for Euan and Arran Macleod. Their delighted mother, Janet, described the news as "wonderful" and said the youngsters could now get transplant operations later this year.
"We have recently heard that bone marrow donors have been found for both the boys and are excellent matches which is wonderful news. It is hoped they will get transplants later this year though we don’t have dates yet. We’re desperately hoping the transplants go well and give our boys the chance of normal lives," she said.
Mrs Macleod, who lives at Upper Dounreay with her young sons and husband Calum, said the donors had been found after the boys’ story was highlighted in the John O’Groat Journal just before Christmas.
At that time, the couple said the best Christmas present they could get would be a phone call to say suitable donors have been found for their sons.
"The article was picked up by a national news agency and was featured in several daily newspapers. As a result, a number of people signed up as donors or decided to raise money for the Anthony Nolan Trust directly or through the boys’ appeal," said Mrs Macleod. The trust keeps a register of potential donors willing to undertake a transplant, finds donor matches and funds education and research into the condition.
The media publicity resulted in Euan being nominated for and recently winning a Little Hero award in a Scottish tabloid. "He was invited to a big celebrity bash to collect his award and also taken on a wonderful shopping trip in Glasgow. He was a very happy boy," said his mother.
Six-year-old Euan and Arran, who is four, have chronic granulomatous disorder (CGD) and although it is genetic there is no history of the condition on either side of the family.
In June last year, Euan became seriously unwell and was airlifted to Yorkhill hospital in Glasgow in a coma. It was discovered he had an abscess on his brain. After successful emergency treatment, doctors tried to discover why the abscess had developed and they diagnosed CGD.
The condition means his white blood cells have a fault which prevents his body fighting bacterial or fungal infections properly. The only cure for the life-limiting condition is a bone marrow transplant, explained Janet, an engineering contractor at Rolls-Royce.
Arran was tested to see if he might be able to provide a bone marrow match but, sadly, he also carries the genetic disorder and needs the transplant too.
Following the devastating news, Janet and Calum launched an appeal on behalf of their sons to raise awareness of the bone marrow register and encourage people to sign up.
They also started raising money for the Anthony Nolan Trust to give something back to the charity and help other families facing a similar plight. The cost of a bone marrow transplant can be in the region of £150,000.
The operations on Euan and Arran are expected take place either in Newcastle or the Great Ormond Street Hospital in London. CGD affects between 250 and 280 people in the UK.
Janet, who accompanied Arran to Yorkhill hospital this week for further tests ahead of the operation, said the family is continuing to raise awareness and money for the Anthony Nolan Trust. "We have several fundraisers in the pipeline, including, hopefully, a big charity auction," she said.
Catherine Maclucas, a friend of the family, is also helping by organising a bring-and-buy sale in aid of the trust and the boys’ appeal.
The event is being held in the Pop-Up Shop in Thurso on Thursday.
"I hope people will come along, help raise money and support this worthwhile cause," she said.