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From: TSS ()
Subject: New year and new hope for Holly and her family
Date: December 30, 2005 at 7:19 am PST

New year and new hope for Holly and her family
Paul Jeeves

FOR the Mills family, the New Year will offer a glimmer of hope which they could never have quite believed back in the summer of 2003.
Their lives were thrown into turmoil almost two-and-a-half years ago when Peter and Linda Mills discovered their youngest daughter, Holly, 18, had contracted a suspected case of variant CJD.
After the news was broken to Holly's parents by neurological consultants on August 20, 2003, the couple made the 90-minute journey back to their North Yorkshire home faced with the prospect that their daughter could be dead within a matter of weeks.
Mr and Mrs Mills were told by representatives who had travelled to Yorkshire from the National Creutzfeldt-Jakob Disease Surveillance Unit in Edinburgh that they should prepare for the worst as Holly could succumb to the neurological condition within as little as 12 weeks.
But 28 months down the line, Holly is still living with her family at their 17th century cottage home defying the initial doom-laden predictions made by experts.
Her parents remain adamant that her survival has been down to an ongoing course of a controversial drug, pentosan polysulphate (PPS), which Holly began two months after she was diagnosed.
After the Mills family carried out relentless petitioning of the Department of Health and the Medical Research Council, the go-ahead was given in September for clinical research into the unlicensed drug.
A monitoring study is being conducted by consultant neurologist Prof Ian Bone from the Southern General Hospital in Glasgow to gather information to help evaluate the potential of PPS as a treatment for CJD.
Prof Bone has already twice visited the Mills's family home, and is due to make a third and final trip in January to observe Holly's condition. It is understood five other patients in the UK who are suffering from CJD are taking part in the monitoring study before it is due to be completed in the spring.
A decision will then be taken as to whether any treatments and therapies to combat CJD can be pursued in the future.
Mr Mills, 55, said: "We are now looking at 2006 with as much hope as we have ever had. People often consolidate their views and opinions over Christmas and the New Year, and for us this is a time when we have this new hope to look towards.
"The year of 2003 was pretty awful for all of us after the diagnosis, and last year we were a little more confident after Holly had gone on the course of PPS.
"But this year, we can actually see some improvements in Holly, she has put on more than a stone in weight and she is still very much herself.
"There are little signs of improvement which we have seen as to how she was a year ago."
After the initial shock of the diagnosis, the Mills family decided to take on the 24-hour care of Holly themselves despite offers of help from the primary care trust and other health agencies.
Mr and Mrs Mills also decided to discover as much as they could about the treatment of the condition, which is when they found details of PPS while trawling through the internet.
They still have no idea how Holly contracted variant CJD, although it remains only a suspected case as the disease cannot be officially diagnosed until a patient has died and a post mortem examination carried out.
But there appears to be a growing consensus that the drug has been instrumental in keeping Holly alive, after neurological experts had initially told Mr and Mrs Mills to avoid treatment of PPS for Holly as they were entering unchartered territory.
The couple, who have four children, even had to pay £35,000 to import specialist equipment from Sweden for the treatment, although they were later reimbursed for the expense by the Department of Health.
Mr Mills said: "It has often been a constant battle to get anywhere, but we have come across some good people along the way who have helped us out immensely.
"We do feel positive although we are still remaining realistic. We really do not know how long Holly has got, but we want to make sure that she is here for as long as possible.
"If she remains in the same condition, then that will do. We are still able to live as normal a life as possible, and we want to make sure Holly does as well."
There has been a conscious decision to provide as much normality for Holly.
Her family continue to take her out in her wheelchair in a specially-converted car to her favourite haunts in York and across North Yorkshire, and Holly is still able to communicate through a series of hand gestures.
Holly had been a keen sportswoman representing Pocklington School at swimming and cross country before taking A-levels in history, English literature, theatre studies and photography.
Now aged 20, she had gained a place at Leicester's De Montfort University to study midwifery before she was diagnosed as suffering from a suspected case of variant CJD after a series of tests were carried out by consultant neurologists.
While PPS remains unlicensed by the Government, Holly obtains her monthly course of treatment, which she started in the October after the diagnosis, through the NHS.
While Holly's mother has taken on the bulk of the care work, Mr Mills has had to step back from the Barnsley-based company which he runs, which makes industrial crushing machinery.
And their youngest son, Robert, 21, has returned for the festive holidays from his third year studies at Reading University for a degree in quantity surveying to help look after his sister.
He said: "It has been a really tough time. When Holly was diagnosed, we had just got to an age when we were able to go out for a drink and sit down and have a proper chat.
"It has made it all the more difficult to think that has been taken away from us at a time of our lives when we should have been having a really good time together.
"Holly is still very much alive, she is not in a vegetative state and does recognise you and reach out to hold your hand.
"We do not know what 2006 will hold for us, but it can only be a good thing that Holly is still here to see in another new year."
30 December 2005

http://www.yorkshiretoday.co.uk/ViewArticle2.aspx?SectionID=55&ArticleID=1299370

TSS



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