IF you are very lucky, your mum is probably your first and your most loyal best friend as you go through your life.
That's why when your mum is struck down with a disease which slowly takes away the person that she was little by little as you stand by and watch, it must be heartbreaking.
One Fraserburgh woman, a mum of two herself, is trying to do something positive to help her mum and others like her in the local area, who suffer from the progressive neurological brain disorder Huntingtons Disease (HD).
Moira Murray (35), with the assistance of family members and friends, has just launched a fundraising campaign called 'The Huntingtons Disease Care Unit Project' to raise money towards building a specialised care facility in Fraserburgh for those suffering from HD.
So far, various fundraisers have raised 1,118 for the project.
Moira knows only too well the devastating effect and the strain the disorder has had on herself and her family as they have tried to care for her mum, Sheila, over the years, before she had to be admitted into full-time care.
Sheila was diagnosed some years ago and after years of living at home, her condition deteriorated so much that she needed to be looked after round the clock. However, because it is a relatively uncommon disease, no specialised facility exists in the area. The nearest facility is in Aberdeen, however, because it's a open door facility it has proved unsuitable for Sheila.
In recent years Sheila has stayed in a care home for the elderly in Fraserburgh, putting great strain on carers untrained in dealing with her condition.
She is currently in a ward at Cornhill Hospital in Aberdeen where Moira says she is "happy", but it's not the long-term solution she would want.
Huntingtons Disease is a neurological disorder which affects cells in the central part of the brain known as the basal ganglia die. Since so much of the brain's activity passes through this area, the death of these cells affects virtually everything about a person, including movements, moods and thinking processes.
However, because the damage caused by HD is only inside the brain, the sufferer may look relatively able-bodied until the latter stages of the disease.
HD is a genetic condition inheritted from a defective gene from one parent. Every child of a parent with the defective gene for HD has a 50/50 chance of inheriting the condition, no matter how many children that parent has. If you do not inherit the HD gene, you cannot get the disease and you cannot pass it on to your children or their descendants. If you do get the HD gene, you will eventually succumb to the disease.
It manifests itself if you live long enough and never skips a generation. As a genetic disease, HD is referred to as "a disease of families" and many families affected have more than one family member suffering at any one time.
Although people can first exhibit signs of HD at any age, most people first show them in their 30s and 40s. Thus, HD is described as an "adult-onset disease". As a progressive disease, HD begins very subtly and only the person with HD, close friends or relatives, and the trained eye of a physician can detect its earliest signs.
It progresses in stages, slowly advancing for many years. It usually takes at least 15 to 25 years for the disease to run its course, sometimes longer. Younger people with HD may find their illness progresses at a faster rate.
Moira's mum isn't the only member of her family to have suffered from the disease over the years, and over many years, other family members have held fundraisers, most notably an annual coffee morning in St Combs which raised 1,000s over many years towards genetic research in hospital in Aberdeen.
Moira told the Herald: "I have had the idea of a specialised facility in the area for a long time because of the problems we have faced with my mum and trying to find a care facility for her.
"Initially, with the help of family and friends, we are trying to do as much fundraising as we can over the next few months to try to build up a financial base to enable us to look towards getting a proposal put together.
"Ideally what I want is a small care unit sited in Fraserburgh which can be used by people with HD living in this area."
Moira explained that she knows of at least two other families in the Fraserburgh area who have a family member with the disease and through her contacts with the Grampian branch of the Scottish Huntingtons Association, she is aware that there are others living in the Maud, Turriff, Banff, Crimond and Peterhead areas too.
"Although it's a relatively uncommon disease, I have been told that this area does seem to have a higher than normal number of people with the disorder, but we don't know why. The nearest specialised facility is based in Kincorth in Aberdeen which is really too far away."
Her idea would be either for an extension to an existing care facility in the town, or a new four bedroom bungalow facility with full-time nursing staff/carers on site offering 24-hour help. Either would be able to offer a more homely environment for residents, closer to their families.
"The current medical thinking is that patients should stay at home for as long as possible. However, the pressure that this puts on families is just unbelievable. What I want to do is to have somewhere to take the pressure off the families, said Moira.
She explained that her mum is currently in a ward in Cornhill Hospital where the staff are all highly-trained offering a very high level of routine which HD patients need, but added that it's not really a suitable environment in which to take her children along to visit their grandma.
"Although she's happy there, this can be a long-term illness, and I want her to be somewhere which offers a more homely environment, which she can call home," Moira explained.
She admits that although organising fundraisers isn't a problem for her, she is overwhelmed with other aspects of what the project will mean. She has already enlisted the help of her friend Caroline Trail, to be the treasurer of the project, because of her expertise in accounting.
However, things like where to go for help in applying for grants, legal matters, perhaps applying to become a registered charity etc are area where Moira is looking for help from others who may have a knowledge which they are able to share.
That is why she is planning to set up an organising committee and is looking for people to come on board. Alternatively if someone can offer help or advice about something, but doesn't want to sign up to be on a committee, she would be delighted to hear from them.
In terms of fundraisers, there are currently quiz sheets on sale in local shops and a soup and sweet held at the Assembly of God in Fraserburgh last Thursday raised 860. Moira has expressed her grateful thanks to all the ladies who helped out during the event and to all those who went along.
The next event will be a quiz night in the RAFA Club in Fraserburgh on Friday, March 19 starting at 7.30pm. Entry is 20 per team of four or 5 per person, which includes bingo at half-time and refreshments.
On Sunday, April 11 from 2pm until 5pm, there will be a car boot sale. Moira is hoping that someone might donate a bouncy castle for the event and with an ice-cream van and hopefully other refreshments on site too, she is hoping that it will be more of a mini-fun day.
She is also planning to a Race Night in May and a Pyjama Prowl for local youngsters, dates and venues for which have still to be confirmed.
Moira isn't the only member of her family raising cash for the Project, her cousin Elaine Strachan is planning to incorporate a sponsored walk along part of the Great Wall during a holiday in China with her friend Michelle McCallum next month. If you would like to sponsor Elaine, sponsor forms are available at various local shops and businesses in the town.
Meanwhile another friend of Moira is planning to do this year's New York Marathon and to give some of the money she raises towards the Project and later in the year, pupils at Fraserburgh Academy are planning to give part of their proceeds raised at a Dress Down Day as well.
If you would like to find out more about the Project, how you can get involved, organise a fundraiser or offer advice, ring Moira on 07811 798212. Moira will be giving a talk to members of Fraserburgh Rotary Club about her plans on Tuesday.
If you would like to make a donation, a bank account has been sent up in the name of the project at the Bank of Scotland in Fraserburgh. The account details are: Sort Code 80-06-86, Account Number 06005689.
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Wednesday 19 June 2013
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