A family which has a double reason to back the work of a leading health unit has backed The Journal’s campaign to safeguard its work.
Brother-and-sister Andrew and Caitlin Scullion were born with the life-threatening genetic condition, Severe Combined Immunodeficiency Disorder (SCID).
The illness means that babies were unable to fight infection and without a bone marrow transplant they were unlikely to survive past their first year.
Had it not been the pioneering work of medics at Newcastle’s Bubble Unit then they would not be here today.
In 1988, Andrew, now 26, was the first in the North to have a bone marrow transplant in Newcastle and since then he has gone on to live a full life.
The NHS business service worker is now backing The Journal’s campaign to help raise vital funds for the Bubble Foundation, which supports the Great North Children’s Hospital’s Bubble Unit.
Andrew, of Sherburn Village, Durham, said: “I feel very proud to have been the first baby to have had a bone marrow transplant. I would imagine that it was a brave step for the medics to take and the unit is a great legacy that has developed over the years.
“It is hugely important that people support the Bubble Foundation. My sister and I would not be here if it were not for the research that they fund. Family always comes first and it’s imperative that people do all they can to help the Foundation.”
When Andrew was a baby he was so ill that he only had weeks to live when a bone marrow transplant from his dad saved his life.
For parents Michael and Lorraine the news that their son had SCID was devastating and not something that they were prepared for.
The couple were told that there was only a one-in-six chance that their son would survive following the then groundbreaking procedure.
Michael, 51, a sales manager, said: “It was a huge shock to be told that Andrew had the condition. As Andrew was the first to have a transplant there was immense uncertainty as we didn’t know what was going to happen from day-to-day.
“Yet without a transplant he would not have seen his first birthday, so it was the only option that we had.”
It was a long wait to see if Andrew’s transplant was a success and he was in isolation in a sterile “bubble” for several months.
Fortunately, the procedure worked and after 10 months in hospital the family were finally able to go home and get on with their lives.
After huge consideration, Michael and Lorraine decided to try for another baby years later. Although genetic experts estimated a one in eight chance of their baby having SCID, there was a 70% chance it could be cured.
Within hours of Caitlin - who is now 19 and a trainee veterinary nurse - being born in 1994, tests identified that she too had the immune deficiency problem and father Michael was once again used as a bone marrow donor.
“It was of great disappointment and sadness when we were told that Caitlin had the condition,” explained Michael.
“We knew what was coming with the treatment but Caitlin responded well and it was great that I was able to be used as a bone marrow donor for both my children.”
Since Andrew was given the first bone marrow transplant in the region, a total of 370 children with immune deficiency problems have had a transplant at the Bubble Unit.
The Bubble Unit at the Great North Children’s Hospital, based at Newcastle’s Royal Victoria Infirmary, is one of only two nationally designated services that treats children with little or no immune system.
More than 20 years ago, a charity named the Bubble Foundation was set up in support of the service, but this is now sadly at serious risk of closure due to a sharp reduction in donations.
The charity raises money for medical equipment, toys, educational aids and funds research into immunity problems.
If the charity was to close then it would mean pioneering research into immune system problems may stop and the region could potentially lose leading experts in this field.
Michael said: “The Journal has always been a big supporter of the Bubble Foundation and it’s great that the paper has launched this campaign.
“If the charity was no longer able to fund research into immune deficiency problems through lack of funds then the brutal line is that babies will die.”