With your support Huntington's disease (HD) can be defeated

With your support Huntington's disease (HD) can be defeated

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Thomas O'Reilly started this petition to ADDOR

Huntington's disease (HD) is an incurable cruel disease. It affects thousands of families worldwide.

It has been likened to having Cancer and Alzheimer's together.

ADDOR aims to help by increasing worldwide awareness of HD and is seeking donations to support research projects and the families of HD sufferers. 

Anne Dyer was 46 years old when she died of Huntington’s disease (HD).

Daniel O’Reilly, Anne’s son has inherited this incurable disease

There is no cure for Huntington’s disease and its progress cannot be reversed or slowed down.

                              But with your help, HD can be defeated

                                  Please donate at addor.co.uk

                                             ADDOR’s Story

Anne was diagnosed with Huntington’s disease (HD) some 7 years before she died at the age of 46. Anne was a kind person, well-liked, filled with laughter and a loving mother. She enjoyed music, sport (supporting Portsmouth FC) and had one of the most expansive comedy show DVD collections in the UK or possibly the world. For many years, she lived with my eldest son Tim and they had a son, my grandson Daniel in 1992. Anne and Tim had separated prior to her being diagnosed with Huntington’s disease (HD), but to Tim’s credit in the last years of Anne’s life, he made regular visits to provide support and fight to give Anne a dignity and quality of life in her final years. He also took her whenever possible for trips to the countryside, stopping for hot dogs and coke in the early days, although later Anne could not attempt such food without the imminent threat of choking to death. Tim, in the later stages of HD, was instrumental in Anne being moved into a care home and getting the specialized care that she needed.

Daniel would also visit his mother as often as he could from University. Those visits were special to Anne and her facial expression of love and happiness, on his arrival were there for all to see. Unfortunately, Daniel had to witness his mother’s degeneration with her constant shaking and convulsions continuing to get worse every time he saw her. The most difficult times came with Anne’s mental degeneration where she would forget who people were and become maniacally violent. However, Anne was always extremely proud of Daniel and his achievements.

I did not see the day to day deterioration of Anne. However over those last 7 years, when my wife and I visited from Russia, where we were living, we saw Anne every four months and witnessed more graphically the startlingly and terrifying changes that occurred in Anne’s condition. Initially, Anne had some mobility, but this changed inside the first eighteen months and she became confined to an armchair for most of the day and around this time, slurring of her speech began, which developed rapidly to where Anne’s speech was incoherent. What followed was more heartbreaking as Anne lost coordination, her arms and legs would flail around, on more than one occasion I was kicked, when standing too near to her chair. Finally eating became a problem, solid food again presented the risk of choking although she did for a period love the Italian dessert Tiramisu, but in the end, even that could not be allowed, as swallowing became impossible. Subsequently, through a tube inserted in her stomach, she was fed nutritional supplements.

Anne passed away, from related complications to young without all of her life’s ambitions fulfilled, a life so cruelly shortened, by this unrelenting incurable disease.

As I write this my heart is breaking not only for the loss of Anne but for my Grandson Daniel who has inherited this disease. Unless a cure or a breakthrough is made in the slowing down process of the gene’s activity, he will, in the not too distant future start to begin the early onset of the death cycle of HD. There are many others in the world with this same early death sentence.

Following Anne’s death, Daniel and I decided to set up a charity in memory of his mother. It has taken time to put the organizational parts together, but ADDOR was launched in late 2017. However, it was decided before appealing for support and donations, to develop a website, design a logo and achieve charitable status recognition with HMRC, for ADDOR to be eligible for gift aid and by the Fundraising Regulator (FR). These objectives have been completed. The next phase will be recognition by the Charities Commission, however, their approval will take time, as a charity must have an annual income of £5000 per year before an application can be submitted.

I would ask all who read this letter, please visit our website www.addor.co.uk , donate and help fund research to eradicate this disease. Very importantly pass the letter to family, friends, and colleagues asking them to support a very worthwhile cause. Nearly 100% of monies raised will be donated to research projects and helping existing HD sufferers and their families in this dark time of their lives. No monies are paid to the Trustees, the only ongoing payments are for upkeep of the website and postal charges.

Thomas O’Reilly – ADDOR Trustee

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