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Life goes on in shadow of cruel disease
When Holly Mills was diagnosed with variant CJD, she was given just months to live. Six years on Sarah Freeman reports on her ongoing battle.
Much has been written recently about the right to die. For the last six years the Mills family from North Yorkshire have been battling for their youngest child's right to life.
In 2003 Peter and Linda's daughter Holly was looking forward to leaving home and starting the next chapter of
her life, studying for a degree in midwifery. Before she had chance to fulfil her potential, in August 2003 the 18-year-old was diagnosed with variant CJD and her family told she was unlikely to survive beyond the end of the year.
"We knew something was wrong," says Linda. "Holly kept forgetting things and her balance started to go, but she underwent dozens of tests and each one came back clear. She was under a lot of pressure at the time, and we just thought a lot of the symptoms were due to stress. When the diagnosis eventually came our whole world fell apart."
Holly's decline was rapid. Within weeks, the bright, bubbly teenager and the girl Linda describes as "the light of her life" was in a wheelchair, profoundly disabled, unable to speak and unaware of her surroundings. However, despite the grim prognosis, her family were determined to seek out what little help was available and going against the advice of many medical professionals decided to allow their daughter to be treated with a controversial and unproven drug, Pentosan Polysulfate. Six years on Holly is not only still alive, but Peter and Linda believe her condition has stabilised.
"We are in unchartered territory," admits Peter. "One expert said that by going ahead with the treatment we were effectively pumping poison directly into Holly's brain. It was an agonising decision and one no family should have to go through, but we made it and we are so glad we did.
"Holly has put on weight, she seems generally calmer and while it hasn't brought the old Holly back we really do believe it is the reason she has lived this long. Right from diagnosis we have always been clear that Holly has a right to life. Anything that may help us give her that right we will try."
The Mills family know their evidence is anecdotal, but after years of campaigning and persuasion, the Government has now agreed to fund a three-year research programme into the drug at a cost of 3.3m. There remains no guarantees the findings will offer any more hope for Holly, but her parents understandably regard the decision as a long and hard- fought milestone.
"Because the life expectancy of those diagnosed with CJD is short it has been difficult to convince some people it's worth spending money on research," says Peter. "We have only got to where we are because of the efforts of a handful of scientists who have made the disease their specialism.
"We have learnt not to expect miracles, but just getting an acknowledgement that what's happened to Holly and other vCJD sufferers is worth investigating is a big step forward." While the Mills family continue to live under the shadow of vCJD, they know for many it's a disease which has disappeared into the history books. The BSE scandal arrived in Britain in the late 1980s and by 1998, 32 people had died of the human form of mad cow disease. To date it has claimed the lives of 164 people, but with vCJD only able to be officially diagnosed following a post-mortem, the Mills family, like many others fear this may be the tip of the
iceberg.
"One of things Holly noticed early on was her driving got worse," says Linda. "I do sometimes wonder how many youngsters have died in car crashes who may actually have been in the early stages of the disease. The problem is with vCJD there are so many unanswered questions.
"I know that people think it's disappeared off the radar. We probably would too if Holly wasn't going through what she is, but people should be made aware that it's still out there."
Last month the Health Protection Agency was forced to issue a warning following the death of a 70-year-old haemophiliac who it is believed contracted vCJD through infected blood plasma transfusions. Doctors said his death was the result of other causes, but it raised fears that many others who received transfusion before 1999, when the link with vCJD became apparent, could be at risk. The Mills will never know how their daughter contracted the disease, but during the last six years the couple, who have three other children, have grown determined to look to the future.
"I make a real effort to take Holly out every day," says Linda, who is her daughter's main carer. "I've become so used to pushing her wheelchair that on the rare occasions I go out alone I feel lost. We try to have as normal life as we possibly can. Holly is well-known at places like Castle Howard and while this isn't the way we thought our lives would turn out, there is no other option but to make the best of it.
"It's funny really, at the time when Holly was diagnosed we were preparing for her to leave home and coming to terms with being on our own for the first time in years. All of a sudden it was like having a baby again. Holly needs round-the-clock care, but we are her parents and we will do everything we can to make sure she has the best quality of life possible."
Aside from occasionally stroking the family dog, Holly has no voluntary movement left. Her plight is made even more stark by the childhood photos which decorate the living room of the family's picturesque cottage.
"We have a regime to keep Holly as well as possible," says Peter. "Her physio is always coming up with new ideas for us to try out and any improvement, however tiny, is important for her and us.
"The one reason Linda and I have been so active in trying to get this research underway is because we want what's best for Holly. It's hard for our other three children to see what has happened. We know they have their own lives to get on with, but we do try to meet up as a family for days out."
In the last six years the Mills have had to come to terms with the harshest of facts. Holly won't become a midwife as she had hoped. She can't cuddle her nieces and nephews and the normal markers of adult life have been replaced by much bleaker landmarks.
"There is all sorts on contradictory advice on the internet," says Peter. "We ignore all of it and just take each day and sometimes each hour at a time."
However, despite the Mills's pragmatism, every so often the couple can't help but dream.
"Who knows what breakthrough scientists may make in the future," says Linda. "Maybe there's even a cure out there. Just think our old Holly lighting up the room again, wouldn't that be something?"
vCJD FACTS
Variant CJD first emerged in 1995. The disease, which causes personality change and loss of body function, is thought to be caused by rogue proteins called prions.
Research carried out by scientists in Plymouth in 2004 concluded 3,800 people could be harbouring the disease without yet having shown any symptoms.
The first case of vCJD transmission by blood transfusion was announced in 2003.
While some scientists believe the disease peaked in 200 when there were 28 deaths, others fear more cases could
yet be diagnosed.
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