Durham Former Bubble Patient Backs Appeal
A 27-year-old Durham man is backing a charity appeal to raise vital funds for life-changing research into immune deficiencies - after himself spending time in an isolated ‘Bubble’.
Aged 15, when most teenagers are enjoying going out with friends and having fun, Phil Simpson suffered a life-threatening illness and had to spend months in the Children’s Bone Marrow Transplant Unit in Newcastle, where he underwent a complicated and painful bone marrow transplant.
During this time, Phil lived in a confined ‘Bubble’ - an eight foot space of clean air to protect him from the risk of infection - also known as sterile isolation. For a teenager living in such confinement and not being able to go out, life was tough - but without vital research funded by The Bubble Foundation, Phil wouldn’t be where he is today.
Phil was diagnosed with Chronic Granulomatous Disorder - also known as CGD - a rare immune disorder when he was around three years old. From a young age, he was prone to illnesses and found it hard to shake off even the most minor infections.
CGD is a life-threatening, life-limiting illness, where sufferers can’t fight bacterial or fungal infections effectively. People who have the condition have a faulty bone marrow gene, which means that some of their white blood cells, don't work properly. The condition worsens as sufferers get older and when Phil was 15, along with the support of his family, he made the decision to go ahead with a bone marrow transplant - the only treatment for CGD.
Without the pioneering work of medics at the Children’s Bone Marrow Transplant Unit in Newcastle, Phil would be facing a lifetime on medication, with his life expectancy cut short. The Unit is one of only two specialised centres in the UK, and the only ‘centre for excellence’ in Europe. Phil made a full recovery after his transplant and now lives medication-free, working full-time in accounts at Durham University and enjoying a healthy, happy lifestyle.
During his time in sterile isolation at the hospital, he was supported by The Bubble Foundation, which provides state-of-the-art medical equipment, games and activities for children on the ward and crucially, funds research into causes, treatments and better outcomes for sufferers of Primary Immune Deficiencies (PIDs).
He holds The Bubble Foundation very close to his heart and now even sits on its Board, supporting its vital work. He spoke about his experiences and explained why backing The Bubble’s latest fundraising drive is so important.
Phil said:
“Back when I had my transplant 11 years ago, the success rate was around 60 per cent. After I’d had it, I was just waiting to feel ill, but thankfully that never materialised. It was a very scary time. It’s tough staying on the ward in isolation too and can be quite boring, especially as I was a 15 year old teenager at the time, wanting to be out with my friends and living a normal life. The staff on the ward were great though and thanks to The Bubble Foundation, I had games and activities to get involved in to help take my mind off what was going on and stave off some of the boredom.
My bone marrow transplant took place on 18th March 2004 and 35 days later, I left the safety of The Bubble Unit, which is the cleanest, safest environment you can be in to protect you from any bugs or bacteria.
Up to that point, I’d never really had a normal childhood. I was always worried about contracting infections and could never go to places where there were lots of people. I love football and enjoy going to matches, which I wouldn’t be able to do without The Bubble. I was 100 per cent cured, it’s just unbelievable really - I owe everything to The Bubble.
I have never forgotten the life-saving medical treatment I received when I was in hospital and the state-of-the-art equipment which is provided by The Bubble Foundation.
I now work in finance at Durham University and recently I bought my first house with my girlfriend. 11 years on from my transplant, with the support of my family and The Bubble Foundation, I am living a normal life.
I always wanted to give a little something back to the team and started attending charity events when I was about 17, to tell people about my experiences and show them why backing the charity is so important.
I now sit on The Bubble Foundation Board of Trustees, it gives me immense pride to be involved in the work of this amazing charity.
The latest charity appeal is calling out for people to back The Bubble and support the incredible research it does. I’d encourage as many people as possible to get behind it. Advances in medical science have come a long way in 20 years, but with new immune disorders being found all the time and people still dying from these terrible illnesses, there’s lots more still to be done.
You just never know when you’re going to be affected by something like an immune disorder, but with treatments today, you have the chance to make a full recovery and go on to live a normal life.”
More than 20 years after it was founded, the work of The Bubble Foundation is impacting millions of people around the world. Survival rates for the children treated on the Bubble Unit have risen from 50% to 90% now in 2015.
To find out more about the Bubble Foundation, you can visit our website http://www.bubblefoundation.org.uk/