A family have given their backing to a charity’s newest campaign after they helped save their daughter.
Lily Thornton was in a serious condition after being diagnosed at nine-months-old with the rare and life-threatening condition HLH (hemophagocytic lymphohistiocytosis) – which affected her immune system and could have led to total organ failure.
But after receiving treatment and a bone marrow transplant during a six month stay at The Bubble Unit, a specialist facility at Newcastle’s Great North Children’s Hospital, Lily – now aged seven – has made a full recovery.
Now her family are supporting the charity The Bubble Foundation.
Mum Maureen, from Whitley Bay, said: “Before Lily was diagnosed with HLH, I just knew something was wrong. She constantly had cold symptoms, no energy, was in pain and had a rash which kept moving.
“We found out she was extremely ill when she was taken to hospital and they told us she had a very enlarged spleen and liver, and her white blood cell count was very high.”
Maureen is urging others to support The Bubble: “I’ve never experienced such gut wrenching fear. When you see your child going through that suffering, you’d give anything for it to be you in their place. The support network you have around you at The Bubble is what got us through.
“The research and treatments the team are pioneering are just amazing and without that, we wouldn’t be where we are today, with the happy little girl we have.
“I would urge people to support The Bubble – it really does make all the difference.”
During her time in The Bubble Unit, Lily lived in a special ‘Bubble’ – a sterile room designed to protect from any bugs or bacteria – whilst she waited for a donor and bone marrow transplant, which would give her the only chance of surviving to live a normal life.
Maureen said: “We were so lucky to have such a fantastic facility on our doorstep. Every single day, we focused on keeping Lily safe. It seems strange now, but at the time, I wasn’t really thinking about the donor – just concentrating on second by second, day by day.
“When a match was found though, it was a big relief.
“The team at The Bubble were amazing. We had dedicated nurses and play assistants on hand to help Lily through everything.
“They made all the difference. I really can’t speak highly enough of everyone we met there. The medical professionals were just brilliant too, their expertise is why Lily made it through.”
“She is absolutely thriving today. She goes to school in Monkseaton and is the picture of health – taking part in such a wide range of activities from ballet and gymnastics, to swimming and judo.”
Maureen added: “When Lily was in The Bubble, it was like we were all living in a bubble.
“Even though we only live at Whitley Bay, we moved into one of the hospital flats so we could be closer to Lily. At the time, Whitley Bay felt a world away.
“We got to know the other families on the unit really well as we were all going through a similar experience and had a lot in common.
“I can’t praise the staff there enough for everything they did for us.
“The Bubble is the safest possible environment and the team are just incredible. It was actually hard coming home, because we felt safe in the Bubble – when we went outside, at first, we were very anxious about what we were exposing her to.”
Professor Andrew Cant, director of the unit, said: “We are on the cusp of such exciting developments in research, helping us improve treatments for patients, find out exactly what they need and give them a better quality of life.
“It’s my vision that all children with PIDs will be diagnosed as small babies, we’ll have treatment that is 100 per cent successful, 100 per cent of the time; less toxic and less demanding than it is today.
“We’ve come a long way, but there’s still a huge amount to do and we need everyone to get behind The Bubble Foundation and help us raise crucial funds we need to get us there.”
The Bubble Foundation has launched its largest ever fundraising appeal – ‘Bubbles for The Bubble’ – which challenges people to show their bubbly side and donate to the charity.
Join in at The Bubble Foundation’s social media channels, and text donate to BUBB01 (+ amount you want to donate – £1, £2, £3, £4, £5 or £10), to 70070, or donate via www.justgiving.com/bubblefoundation/
To find out more about the Bubble Foundation, visit www.bubblefoundation.org.uk/