Charlie Randle was just two weeks old when a groundbreaking test revealed he had a life-threatening illness.
Charlie, whose family is from Manchester, was diagnosed with a condition called severe combined immunodeficiency (SCID). This means, effectively, that his immune system was not working – and he was at risk of contracting any life-threatening infection.
But, because he was diagnosed so quickly with a ‘heel prick’, his parents Jen and Dom were able to have him sent to Great North Children’s Hospital in Newcastle at RVI for specialist support – and now, after a his father’s bone marrow, he’s back home, he’s gaining weight and playing with his brother Alfie.
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GNCH has one of two children’s bone marrow transplant units in the country – it is known as the “bubble unit” because, even more so than most areas of the hospital, it has to be kept sterile to prevent infections as trivial as a cold posing a deadly threat to little ones like Charlie.
Now, his parents are desperate to raise awareness of illnesses like Charlie’s and help raise money for the charity – The Bubble Foundation – which got them through a terrifying time. Mum, Jen, 30, said: “Although we had a tough time during Charlie’s treatment, especially during chemotherapy, as well as being away from home and our families, getting the diagnosis early has makes a huge difference. Without it, our story would be very different.”
SCID affects around one in 58,000 babies in the UK – those who appear healthy at birth are actually life-threatening. Without treatment, children are likely to die within two years. Jen added: “Charlie is doing great. He has put on a lot of weight since being released from hospital and is now at his target weight. He suddenly has a huge appetite so he finishes the bottles and he is always very excited when he sees his bowl of food.”
The family left Newcastle in January – at the height of the Omicron wave of Covid-19, which Jen said added to their worries – but Charlie’s transplant appears to have been a success. She added: “Charlie has caught two viruses since returning home – we quickly learned that it was impossible to keep all the viruses away with a three-year-old also at home. Luckily, Charlie fought off the two quickly, without needing to be hospitalized. was a good test of his new immune system and one we needed because it allowed us to settle down lightly, reassured that his body was capable of fighting things now.”
World Primary Immunodeficiency Week takes place in the last week of April each year and this year’s theme is improving access to healthcare for those affected. Jen said it was essential to raise awareness “so that people understand that these conditions exist, but they can be treated”. She added that it was also important for people to know how much the treatment relied on stem cell, blood and plasma donations.
The couple have so far raised £9,000 for the Bubble Foundation, and this will go towards care for families in a similar situation to theirs. Jen said they were “incredibly grateful” for the care Charlie had received, and thanked the charity as well as the “incredible doctors”. She shared how the Bubble Foundation helped her family learn about infection control and reassured them that their baby was in good hands.
The charity is also supporting the siblings of those affected, helping Alfie get involved in the game when he was finally reunited with his parents in Newcastle. They had been separated for several months.
Charity fundraising manager Gill Wheeldon said: “We support World PI Week and hope to see the day when every baby who walks through our door will come home to live a normal, healthy life, just like Charlie , it’s fantastic to see you are doing so well.”
The charity has been around for 30 years and works to improve treatment and awareness of diseases like this. It also funds life-saving research.
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