Huntington’s Disease (HD)

ADDOR

Anne Dyer & Daniel O’Reilly Foundation

About Anne

Anne was a housewife and mother who died at the age of 46 in 2014. She enjoyed life, had a wonderful sense of humour and was very interested in Archaeology and wildlife programmes, loved listening to music and played the clarinet in the school orchestra. She would avidly watch documentaries on television, was a great fan of all types of comedy and Formula 1 motor racing. Anne’s film collection was extensive and she probably had one of the largest collection of comedy DVD’s in the UK. Her chuckling laughter, echoing around the room, when watching comedy shows, was infectious. She was a longtime supporter of Portsmouth FC and there is a plaque in her memory at the club’s Fratton Park Ground.
Anne inherited Huntington’s gene from her father who also died of the disease, although in his day he was diagnosed with motor neuron disease.  The signs however were there that Anne had developed the Huntington’s disease symptoms a number of years earlier, but not confirmed until 7 years before she died.  After the diagnosis, life for her and those around her changed dramatically, the decline in her health accelerated as Huntington’s disease increasingly took its toll and her life ended so early and so tragically.
Throughout this time right to the end of her life, the body slowly stopped functioning normally and Anne became trapped in her body but her brain was still very active and the frustration and anger, would sometimes be seen as she tried to communicate with us.
To see the deterioration of someone, anyone’s loved one with this condition is heart breaking and extremely traumatic, as the brain is attacked, co-ordination and muscular activity declines.  Eventually full time care is required, solid food will be stopped at some point, as the muscles do not respond, the sufferer cannot swallow and can easily choke to death.  In Anne’s case particularly during the latter stages, when she had been moved to a Care Home, her  favourite food was Tiramisu, an Italian desert, easy to swallow, however she still needed to be careful watched to avoid her choking. Food, to keep her alive was subsequently passed in liquid form through a tube inserted in her stomach.
I was there to see this over those last few years, not on a day by day basis, as others did, but on visits with my wife, who handled the situation with greater emotional understanding, gentleness and insight than I could.  I found I was emotionally out of my depth. The involuntary spasms, the wasting of the body and her problems in communicating were extremely difficult to see. I also experienced the force generated by the spasms, as Anne’s leg’s kicked out involuntarily, I felt the impact on more than one occasion. My son Timothy, Anne’s ex-partner, who supported her during those final years and my grandson Daniel bore the brunt of the sharing, caring and doing the best they could to provide the quality and dignity of her life to the end.
Anne greatly enjoyed being taken out for short periods into the care home gardens in her special HD chair (which included feet and arm restraints to minimise the chances of her injuring herself, when she had the frequent muscular spasms and twitching episodes).  She also looked forward to Tim taking her out for a drive into the country at the weekends, where she enjoyed the scenery and a picnic.  
To the end Anne was a gracious, caring, loving young woman, who was taken before her prime. We dedicate this charity in her name as a way of focusing attention on the destructive fatal nature of HD and in her memory.
Trustees

Thomas Francis O’Reilly
Timothy Nigel O’Reilly
Andrew Kevin O’Reilly
Fourth Trustee to be advised

HD Support & Technical Advisor
Daniel Timothy O’Reilly

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