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Living life outside the bubble
Philip Simpson
Philip Simpson

AS a child, Philip Simpson had to live a life apart from his friends.

With his body affected by a disease that weakened his immune system, he was left indoors while his friends went about the rough and tumble of a regular childhood.

Philip, now 19, from Belmont, was born with chronic granulomatous disorder (CGD), a rare genetic disease passed down from his mother. He was born with a faulty gene in his bone marrow - meaning his white blood cells could not fight off infection.

"When I was five years old, doctors at Newcastle General Hospital diagnosed me with CGD," he said. "This meant that my body lacked the capability of fighting off even small infections. So for years, I was susceptible to anything that was going around as the disease weakened my immune system.

"While my friends played football, I pretty much stayed indoors until I was 15 years old."

Philip's illness affected his growth and gave him bowel problems so severe that he spent most of his childhood indoors.

But for Philip - thanks to stem cell treatment pioneered by experts at Newcastle General Hospital's Stem Cell Transplant Unit for Primary Immuno-deficiency - there was hope.

He said: "Doctors felt the only cure was a course of chemotherapy, which would wipe out all my cells, even the healthy ones."

The chemotherapy effectively destroyed his defective white blood cells. Because Philip was particularly vulnerable to infection at this stage, he had to stay in the hospital's so-called "bubble unit" on ward 23. This is an area of pressurised sterile air designed to protect patients without an effective immune system.

Philip was there for two weeks, while his body recovered and became ready to accept a bone marrow from a healthy donor.

In Philip's case, the bone marrow - full of healthy stem cells which could potentially cure him - came from a woman in Liverpool who was a perfect tissue match.

During the transplant, two bags of donor blood rich in bone marrow-containing stem cells were fed into Philip's arteries.

He then had to wait another two months on the bubble unit while doctors checked whether the transplant had been successful and that he was able to make his own infection-fighting white blood cells again.

Like any teenager, Philip found this period of relative isolation very difficult. "There is a charity which provides TVs and Playstations, but it is very, very boring inside the bubble," recalled Philip.

"I had somebody from my family there all of the time, which helped, but it was a difficult time for me. The timing meant that I missed my GCSEs and lost touch with quite a few people in my year group at school."

Some of the time Philip was fed by a tube into his stomach, but he retained a hearty appetite for the real thing as well. "I never stopped eating. The food had to be specially prepared in sterile conditions, although canned food was OK for some reason," he said.

After two months, he was allowed home, but had to live in sterilised conditions for a further six months.

Dr Andy Gennery, senior lecturer in paediatric immunology and bone marrow transplantation at Newcastle University, said the North-East unit has probably carried out more bone marrow transplants for CGD than anywhere else in the world.

The unit has carried out 20 bone marrow transplants.

"We are presenting our CGD transplant results at a European conference at the end of March, but we don't think the rest of Europe needs much convincing. Our results are pretty good," he said.

Now fit and healthy and doing a business administration apprenticeship at Durham University, Philip is just delighted to be able to live a normal life.

"One of the things I really missed was playing football. Now I play regularly and really enjoy it."

He said his mum and dad, Christine and Leslie, and sister Lauren, 17, had been very supportive during his illness and long period of recovery.

Gill Johnston, fundraising manager of the Bubble Foundation, the charity which supports the work of the Bubble Unit, said the organisation needed to raise £200,000 a year to meet targets.

"The NHS funds the unit, but we pay for research, support the families and buy a variety of toys and games for patients in the bubble."

Because the Newcastle unit covers the northern half of the British Isles, it has seen fundraising groups spring up all over the UK and Ireland.

"The Irish broadcasting company RTE came over recently to do some filming and a fundraising group in the Republic of Ireland is being set up later this year," said Gill.

This month, the North-East England Stem Cell Institute, which includes the Centre for Life, Newcastle University, Durham University and Newcastle Hospitals NHS Foundation Trust, will try to raise public awareness about stem cell research.

Over two days - March 15 and 16 - stem cell scientists will be available to answer questions from members of the public at the Geodesic Dome outside the Gala Theatre in Durham between 10am and 4pm.

To support the Bubble Foundation, visit www.

bubblefoundation.org.uk or ring 0191-256-3460.

3:47pm Monday 3rd March 2008

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