Andrew and Michelle Phare are hosting a charity ball to raise funds for Huntington’s disease in the hope of finding a cure
After watching his mum and brother die of the same disease, and now seeing his other brother go through the last stages of it too, Andrew Phare still does not know whether he will suffer the same fate.
The 44-year-old’s family have tragically endured the most brutal suffering at the hands of Huntington’s disease, a genetic disease with no cure which gradually causes the body to waste away.
Not only does he not know whether he has the faulty gene, he is unsure whether his two children also have it.
Andrew and Michelle Phare and their two sons
If a parent does have the faulty gene there is a 50 per cent chance of inheriting it and the disease.
Andrew, who served in the Army for 26 years, has opted not to have the test to find out if he has the disease because of the devastating and life-changing impact it has.
Instead, he and his wife Michelle, of Bradninch, have decided to focus their attention on raising money for the Huntington’s Disease Association in the hope that a cure will be found.
For the fourth year, they are hosting the Bradninch Charity Ball to raise money for vital Huntington’s research, as well as for two other charities – Hospiscare, and Hele Memory Cafe.
It will take place this year on Saturday, November 18, at Padbrook Park Hotel in Cullompton, from 6pm to 1am. It has a capacity for 150 people, and tickets have sold out in previous years and are still available for this year’s ball.
Andrew and Michelle at last year’s ball
The first charity ball raised just over £4,000 and it has grown ever since with last year’s raising £16,000 through match funding from Santander.
Michelle, a hairdresser, knew very little about Huntington’s disease – which affects your body’s nervous system can cause changes with movement, learning, thinking and emotions – until meeting Andrew.
Once symptoms begin, the disease gradually progresses, so living with it is very challenging and means having to adapt to change, taking one day at a time.
Andrew pictured on the far left next to Tony, their dad Geoff and Stephen
The symptoms of Huntington’s disease vary widely between people. Even people in the same family may be affected differently.
They usually develop between the ages of 30 to 50 years, although they can start at any time.
The carrier of the gene in Andrew’s family was his mother who died in 2007. She passed it onto her eldest son Tony who passed away in November 2015, aged 49.
Tony Phare before and after being diagnosed with Huntington’s
Her middle son Stephen, 47, is currently being nursed through the last stages of the disease.
Michelle recalled: “Tony was tested for the disease in 2003, because he had started showing signs of the disease such as involuntary movements and mood swings.
“When Tony tested positive Stephen already knew he had it after also getting symptoms.
“They won’t test you until you have received counselling to see if you can accept the results. There is quite a high suicide rate associated with Huntington’s disease as there is no cure for it at the moment so it’s a catch 22 whether people want to get tested.
“It’s a bit like motor neurone disease in that it affects the nerve endings so everything closes down. It’s almost like being trapped in your body.”
Stephen Phare is now in the last stages of Huntignton’s disease
About a year into her relationship with Andrew, Michelle says he told her that he could be a potential carrier of Huntington’s disease.
They made the brave choice of having children together in the hope it would not be passed onto them, and if it was then by the time they were adults a cure would have been found. They now have two sons, Evan, 12, and Noah, six.
Michelle said: “When I was pregnant with my first child they offered us a foetus test and said if it was positive they would expect me to have a termination so we chose not to have it done.
“Most families have got a defective gene of some sort be it cancer or Alzheimer’s, but with our family it’s Huntington’s.
Andrew with his parents and brothers
“When our children are 18 there might be a cure for it. We have not said anything to them because we don’t want to worry them and we don’t even know if Andrew has it.
“We have gone through our life together not burying our heads in the sand but trying to be positive thinking that Andrew is clear, and he is not showing any of the symptoms.
“It does not cross my mind every single day, but it is always there at the back of your mind.
“It’s one of those things you can’t do anything about. The only way to make you feel a bit better is to raise money so that other families don’t have to go through what we have.
“It is so sad what Andrew has gone through and I don’t know how he copes to be honest. I can’t imagine how I would feel losing my mum and two brothers. I think that is why he is so close to our children and puts so much into them as they are nearly all he has got once his brother dies.”
Last year’s charity ball raised £16,000
The theme of this year’s charity ball evening is Casino Royale with an actual casino and live music from upbeat covers band Bootlegger’s Turn.
Tickets also include a complimentary coach which will be picking up from a set location in Exeter, West Hill, Hele near Bradninch, and Bradninch.
Guests will receive a complimentary drink on arrival, followed by a three-course meal during which a close-up magician and singer will be the entertainment.
The evening will also include a charity auction with prizes including a signed print from Totnes artist Yvonne Coomber, and meet and greet with the Red Arrows, a piece of Gucci jewellery, a signed pair of Exeter Chief Jack Nowell’s rugby boots, glamping weekend, and a week’s stay in a flat at Carbis Bay.
Tickets for the ball cost £47.50. Tables of 10 can be booked. To book call Michelle on 07966 999931 or email firstname.lastname@example.org