Interview - Alice Halstead: Hospital-bound Alice: All I want to do is help others

When Alice Halstead went into hospital, she was a teenager about to sit her GCSEs. Now she is a young woman who should be at university or getting a job. But for the last three years, time for Alice has stood still.

"In my mind I am still that 16-year-old who went into the Leeds General Infirmary for two weeks and stayed two years. I haven't done all the things my friends have done and now I wouldn't feel confident doing them," she says.

Alice was diagnosed as suffering from Type 1 diabetes in June 2006, possibly brought on by a bout of glandular fever. But within months it became apparent that something wasn't right. One minute her blood sugar level could be sky high and then plummet to dangerous levels with no explanation or warning.

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A number of blood tests were taken and, baffled by what they found, doctors sent samples of her blood around the globe. They even posted requests for help on the internet in an attempt to find other patients showing similar symptoms.

Eventually, they got some results – a high insulin level and insulin antibodies were present, a condition known as Hiratas Disease, which explained such severe symptoms.

"It was a complete guessing game and a lot of sleepless nights for my consultant. I was unique. My body was fighting the insulin I required to keep me alive and although I needed it, it was making my condition worse," explains Alice. "My hypos were becoming more severe and I spent a large amount of time connected to an intravenous infusion."

Alice, who has raised more than 27,000 for children's charity Rays of Sunshine in just five months, underwent a series of plasma exchanges to get rid of insulin antibodies, removing faulty plasma cells and replacing them with artificial healthy ones.

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Unfortunately, it was not the long-term answer. Although her own antibodies disappeared, they quickly returned, attacking her body. Any insulin injected into her body was stored by the antibodies, which then released large amounts into her bloodstream, causing her blood sugar to plummet. An intravenous drug was found which would remove all her antibodies and restart her immune system completely. Although the drug removed her antibodies, she still suffers from fluctuations in blood sugars.

However, due to having had so many intravenous lines fitted and her immune system compromised, she has suffered a number of severe infections. For the last year, Airedale Hospital has been home for her and mum Linda. But just a few weeks ago, doctors told Alice that she was well enough to go their real home in Embsay where Alice's dad had been looking forward to their return.

"We had started to go home during the day and then the odd night preparation to it being full- time," says Alice. But just as she was about to leave the hospital behind, her condition started to worsen and she was told the news she feared most of all – the insulin antibodies had returned.

"We knew something was starting to go wrong since before Christmas," says Alice who organised a massive fund-raising Sunshine Ball at the Queens Hotel, Leeds, which raised 17,000 to help children's dreams come true.

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"The night before the ball I had a hypo when my blood sugars plummeted. The doctors try to find a reason, but the problem with me if that there is no reason, it is just me."

Doctors are reluctant to put her back on the IV drug as they are worried about the risk of infection which has already meant that she has had to go back to having insulin administered through a pump into her flesh.

"It was a disappointment not to be going home and dad was really looking forward to it," says Alice, hardly losing the broad smile from her face. "But it would have been worse if we had got home and then had to go back into hospital."

The news was a double bow as Alice had been hoping to take up a job with Rays of Sunshine to open a Leeds branch of the charity which grants sick children's wishes.

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"It was my dream job," she says. "There is no better feeling than knowing these children have had their dreams come true and part of it is down to you. But I couldn't take the job not knowing whether I was going to be well enough to do it. But I still really want to do it when they have got me sorted."

The return of the antibodies causes another problem for Alice, her family and the doctors.

"Before I was transferred to Airedale, I was being treated at the Leeds General Infirmary in paediatrics. I will now either have to go back to the LGI but in an adult ward where the doctors don't know my case or to Cambridge. It is centre of excellence and they are aware of me but again I would be in an adult ward with people in their 60s and 70s."

Linda is worried about what will happen to her youngest daughter if she were to be put in an adult ward.

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"Alice is a completely unique case, the doctors have told us that. Her blood sugars can shoot up and plummet without warning. I can tell when something is wrong, and it is often in the middle of the night. I am worried that in an adult ward where there are fewer staff they just won't have the time to monitor Alice as much as she needs. I am not an over-protective mother, but I want what is best for my child.

"If she is put on an adult ward then I will only be allowed in at visiting times and I am worried what will happen to her."

The Halsteads are planning to meet with the doctors in Cambridge to try to convince them to allow Alice on to a children's ward so that Linda can stay with her.

"When all this is over, I am going to lobby for more teenage wards which offer a transition from a children's ward to and adult ward, similar to those for cancer sufferers," says Linda.

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"It is worse for mum," says Alice. "When I am in a hypo, I don't know anything about it. She is the one that has to watch me fitting, but I cannot imagine being there without her."

Despite all the setbacks and an uncertain future, Alice is still smiling and planning her next fund-raising ball in March which she says will have to be bigger and better than the last. She recently travelled to London for an awards ceremony where she met JLS and Rays of Sunshine gave her a special award. She has also been named as one of the first patrons of Leeds Children's Hospital.

"I could just sit here and get downhearted or I could try to make life better for other children."

To donate to Alice's appeal, log on to www.justgiving.com/

Alice-Halstead or visit www.sunshineappeal.org.uk