A family from Prescot is calling on people to support the work of The Bubble Foundation UK, after the charity supported their 12-week-old son through a life-saving bone marrow transplant.
Samuel Roberts was born with a severe combined immunodeficiency (SCID) which means his body is unable to properly fight off infection.
Without intensive treatment in the form of a bone marrow transplant, Samuel’s immune system would be significantly weakened, leaving him highly susceptible to illnesses such as severe chest infections and pneumonia.
Most babies with SCID who do not receive treatment die before their first birthday, as even a simple kiss from their mum could be enough to prove fatal.
Now back at home following Samuel’s intensive treatment, mum Pamela and the rest of Samuel’s family are calling for people to support the charity that has been there for them through the toughest time of his life.
Pamela said: “Samuel has a genetic disorder called X-Linked SCID which is an immune deficiency passed down from mother to son. I have a brother who had the same condition, so I knew when I fell pregnant with Samuel there was a chance he could also be affected.”
Pamela added: “Because of my brother’s condition we went through a lot of tests during the early stages of my pregnancy with Samuel. I knew what having SCID would mean for him, and I didn’t want to take any chances.
"I got the genetics service at Alder Hey Children’s Hospital involved right away and by the time I was six weeks pregnant we already knew I was having a baby boy, which prompted further tests.
"By 12 weeks we knew Samuel had the condition, and so my mind was set then on putting things in motion to make him better as soon as I could.
“Because we’d done the genetic testing, we were able to look for a bone marrow donor before he was even born and made sure that he could receive the bone marrow transplant that would hopefully save his life."
He was treated at the Great North Children’s Hospital in Newcastle - one of only two such specialised centres in the UK.
"It is hard, seeing your tiny baby in hospital, but you deal with it.
You’ve got to be strong for your baby, and remember that the outcome will hopefully be that Samuel is a healthy child who can go on to live a normal life.”
Just six weeks after he was born, Samuel was admitted to his Bubble to keep him safe from potential infection – an 8ft by 8ft area in which he was protected by a cocoon of sterilised, filtered air until his treatment was complete.
The stem cells from his bone marrow donor should help Samuel build a new, strong immune system, which will allow him to go on to live a normal life.
Pamela added: “One of the hardest things was moving away from Liverpool. I have two older daughters so it split our family in half.
Samuel’s dad stayed at home with the girls to try and keep their lives as normal as possible.
"My eldest daughter, Olivia, is 15 so this is her GCSE year, and my youngest daughter is 13,” said Pamela. “She sings for the Liverpool Philharmonic Choir so she’s got a lot going on with rehearsals and concerts – we needed to keep things as stable as possible for them during Samuel’s treatment.
“Thankfully, Samuel’s treatment went well, and he’s now been allowed to move back home to Liverpool. Samuel must be closely monitored to ensure his immune system builds back up, meaning the family must take him for check-ups in Newcastle every two weeks.”
Families like Samuel’s are supported throughout their child’s stay on the ward by The Bubble Foundation. The charity provides the children with Wi-Fi, Sky television, toys and educational aids to make their lengthy stay
in hospital more comfortable, whilst also funding research into better treatments for immune disorders.
Now Pamela is urging other families to support the work of the charity by donating to its biggest ever fundraising campaign, ‘Bubbles for the Bubble.’
“Although we knew that there was a chance Samuel could be born with SCID, nothing can really ever prepare you for what it entails,” Pamela continued.
“The staff at the unit have been amazing – they really supported us and helped us at every step of the way through what is a really scary time.
“Being on my own in Newcastle, it was comforting to know there was lots of support from the Bubble Foundation, and the things they provided make your time a bit more bearable.”
Professor Andrew Cant, who treated Samuel and is a world-leading paediatric consultant, said: “If it wasn’t for funding through The Bubble Foundation, success stories just wouldn’t be possible.
“But there’s still such a long way to go. With new immune disorders discovered every year, the potential for what research can do, and the lives it could save around the world, is huge. I would urge as many people
as possible to support this work.”
You can donate by texting BUBB01 £3 (or a denomination of your choice up to £10) to 70070 to donate the suggested £3. Alternatively, you can donate online at www.justgiving.com/bubblefoundation.
All funds raised will go directly to The Bubble Foundation UK, which continues to pioneer research into severe primary immunodeficiencies and support dedicated patient treatment and care and integrated family support.