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'When you start chemo it feels like you're on a rollercoaster and you can't stop it'' When Sarah Thomson's daughter Ellie was diagnosed with a rare immune deficiency, her only hope was a bone marrow transplant from her brother or sister. Karen Wilson speaks to the mum-of-three and small business owner.

KISSING and cuddling your baby is something most parents take for granted, but when Sarah and Richard Thomson's daughter developed a rare immune deficiency, they couldn't kiss her for two months.

The only way they could cuddle or play with Ellie, now two-and-a-half, was wearing a pinny and hair net after scrubbing their hands for three minutes.

After two bone marrow transplants at Newcastle General Hospital's Bubble Unit, Ellie is on the mend at home in Stichill, near Kelso with brother Will, 11, and sister Lucy, 12. But she's had many obstacles to overcome since her birth in April 2007.

"When she was born she seemed fine," says Sarah, 39, who owns two fashion boutiques in Kelso and Melrose in the Scottish Borders.

"But when she was a few weeks old, she was rushed to hospital with a twisted gut. They found out she had a missing link between the left and right sides of the brain, which can affect development."

Over the next few months, Sarah and her husband Richard, who runs a design agency, were in and out of The Royal Hospital for Sick Children in Edinburgh as Ellie became ill with epilepsy and recurring chest infections. But the underlying reasons of her ailments was unclear.

As she deteriorated and was hooked up to a ventilator, the couple feared the worst. But a consultant called Laura Jones who had worked at Newcastle General's Bubble Unit stepped in.

"Laura realised something was wrong with Ellie's immune system," says Sarah, who grew up in Alnwick. "She sent bloods to Newcastle and we got the results back that night."

That was when Sarah and Richard were given the terrible news that seven-month-old Ellie was suffering from MHC class II deficiency, a very rare condition that affects only 120 children in the world. Without a bone marrow transplant, she was unlikely to live past four years old.

"We were so relieved," says Sarah.

"They told us that although she has an immune system, it's missing a tiny element that can't fight off diseases. She's also got complex medical needs as well. It was fairly major but there was hope because a transplant could save her."

Thankfully, Sarah and Richard's two older children were both perfect matches. But as Ellie only weighed four kilos, she wasn't yet strong enough for the procedure.

"We had to build her up to be as strong and fit as possible for the transplant as she needed intensive chemotherapy to wipe out her immune system," says Sarah.

"It was very difficult but when you start chemo it feels like you're on a rollercoaster and you can't stop it."

As both Lucy and Will were good matches, it was decided that Lucy, being the oldest, would donate her bone marrow first.

"Lucy was terrified because she's petrified of needles," says Sarah.

"We always made it clear to her she didn't have to do it, but she was fantastic."

The procedure was carried out at the start of 2008 in Newcastle. It was a traumatic time for Sarah and Richard as Lucy had her operation at the RVI while Ellie awaited her transplant at Newcastle General's Bubble Unit.

Bone marrow was taken from Lucy and the next day Ellie underwent a transfusion. The next months were crucial as Ellie recovered in a sterile 'bubble unit' and the couple kept a vigil, in a flat near the hospital.

"We just wanted to be beside her even if she was asleep," says Sarah. "Richard and I had a shift system -I did the week and he did the weekends so she was never left for long. And my mum flew back from Hong Kong and was there the other two. "One of the worst things was getting a cold and not being allowed in with her. Lucy and Will couldn''t touch her and they found it hard."

Sarah has nothing but praise for the team who looked after Ellie at The Bubble Unit. "I rave about it," she says. "It's the most fantastic and incredible place you could ever go to. You have good days, bad days and days when you're in a foul mood, but the nurses are always fantastic. It sounds odd but we had some funny times with the nurses. If you didn''t laugh, you''d definitely go mad."

Ellie finally came home in June, after a month in a halfway house, but unfortunately she was starting to reject the bone marrow.

"We always knew that was a possibility," says Sarah.

"But in my mind I'd only got as far as thinking, she either makes it or she dies."

After six weeks at home she was ready for another bone marrow transplant, this time from her brother Will.

"It was devastating having to do it again because we knew what was coming," says Sarah. "Lucy and Will knew it meant we''d be split up again and they just wanted us all to be home together."

This time the procedure worked well and Ellie came home before Christmas last year. Although developmentally, she is behind her peers and is fed through a tube in her nose, Sarah says she's seen a vast improvement.

"She's put on weight and her hair has grown back," she says. "She can't talk in the normal way, but she has her own way of communicating. If you put the wrong DVD on, she'll get cross. She's quite a madam. But a joy.

Lucy and Will love her to bits. They realise what an important thing they've done."

The next milestone will be starting a special needs nursery next September, as Ellie is not allowed to socialise with other children yet. But now, Sarah and Richard are enjoying family life without such frequent hospital visits.

"It's all very normal now," says Sarah. "You wash your hands and keep everything as clean as you can, but not obsessively. We're over a year into the second transplant so we're much more laid back about things now. You just get on with it."

Now Sarah is trying to give something back by launching her own charity, The Children's Immunology Trust, which will complement the work of The Bubble Foundation. She's raised about pounds 3,500 through a fashion show and bonfire party with a grand ball planned for April 2010 in Kelso. With 400 tickets she hopes to generate pounds 60,000.

"We'd like the money to go to research because there's no public funding," says Sarah, who will split the money between Newcastle and Edinburgh.

"We also want to fund nurses and family support for brothers and sisters too, because it's really, really hard for them. By the end of 2010, I want to raise pounds 100,000."

HOW YOU CAN HELP THE Bubble Foundation Newcastle General is the only hospital outside London's Great Ormond Street to help children like Ellie.

Its Bubble Unit is leading the way and survival success rates have increased from 50% to 80% in the last five years. The Unit was established in 1987 to treat children born with defective immune systems, by bone marrow transplantation. Since 1994 and 2000, it has treated those suffering from leukaemia, and severe arthritis.

The Foundation helps buy equipment and toys, as well as funding research and supporting parents by providing flats.

For information, go to www.bubblefoundation.org.uk or call (0191) 256-3460.

For tickets for the charity ball in Kelso on April 24, 2010, or offer support, email info@citrust.co.uk.

CAPTION(S):

RARE DEFICIENCY Ellie, back home after the second succesful bone marrow transplant. FANTASTIC SUPPORT Ellie''s consultant Mr Terry Flood with some of the Bubble Unit nurses. From left, Caroline Brown, Brenda Nutbeam, Paula Askew, Lyndey Winship and Lindsey Spinks. FAMILY UNIT Sarah with Ellie, Will and Lucy at the Bubble Unit, Newcastle General Hospital, and below in Alnwick Gardens.
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Title Annotation:Features
Publication:The Journal (Newcastle, England)
Date:Nov 24, 2009
Words:1307
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