Joe Doran who suffers from Huntington Disease deserves adequate care and a quality of life
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Joe Doran, a 50 year old male from Longford, was diagnosed with Huntington's Disease (HD), 14 years ago. He has a heart of gold and is highly respected within the community of Longford and further afield.
Huntington's disease is a degenerative illness. Sufferer's brain cell's die, resulting in involuntary movements, impaired balance and coordination, slurred speech, difficulty swallowing. Physical abilities gradually worsen until coordinated movement becomes difficult and the sufferer loses the ability to talk.
As the disease progresses, memory deficits appear. Impairments range from short-term memory deficits to long-term memory difficulties, including deficits in the memories of one's life, the body forgets how to perform activities that most of us do without even thinking, and working memory diminishes. Cognitive problems tend to worsen over time, ultimately and sadly leading to dementia. This is a genetic disease, for which there is NO cure.
Joe Doran, inherited this illness from his Dad, John, who was diagnosed with HD in 1999 and who sadly took his own life.
Life for the Doran family has seen a succession of tragic events unfold since the death of John Doran. In July 2003, Joe's brother John (known to most as Johnny Massacre) was killed in a road traffic accident. The following month, Joe's Mam, Pauline, suffered a heart attack and in September 2003, Joe's cousin, who was also his best friend, also died by suicide.
Joe has one remaining sibling, his sister Anne, who lives in Cork with her husband and young daughter. Anne makes the 3 hour commute from Cork to Longford as often as possible to support her Mam and to support Joe.
Pauline's health is far from good, and she has been admitted to hospital several times over the past number of years. In fact it was after the death of Joe's Dad, that Joe moved home to look after his Mam, but unfortunately, roles have now reversed and it is his Mam Pauline who is Joe's sole carer.
Joe's condition has deteriorated over the last 5 years, and although Joe does his utmost to remain as healthy as possible and to involve himself in community activities, a community which looks out for Joe in every way possible, in particular those in the railway station, those who organise the Park Runs and those in the Mall Complex, looking after Joe at his home in Longford is no longer feasible.
His Mam, who has given so much to Joe and who loves him dearly, recently stated in an article published on the "Humans of Longford Facebook page" that she "is getting older (she will be 70 next birthday), she is exhausted, she is physically, financially and emotionally broken and has nothing left to give. She is at a loss as to what to do or where to turn to".
Pauline has campaigned tirelessly for the past 4 years to get Joe a placement in a facility like Bloomfield in Rathfarnham Dublin, this is the only specialised unit in Ireland for younger people suffering from HD in Ireland, but unfortunately she has not been successful.
Instead the HSE have offered to put Joe into a home for those over 65 in Longford. At just 50 years of age, Joe is too young to go into this facility, and, for all those who know Joe, this is a heartbreaking and devastating offer.
Bloomfield House can give Joe a quality of life. We have researched it thoroughly, and know that, even though it will be heartbreaking not to have Joe in Longford, Bloomfield house can give Joe a quality of life. Sadly that quality of life cannot be provided in Longford. We wholeheartedly wish it could, but unfortunately, for Joe, his family and friends, it can't.
JOE HAS SUFFERED ENOUGH..... he only has a few years left in which he will be able to communicate, something he is already having difficulty in doing so. He deserves to be in a facility which has the specialised staff that can give Joe the quality of life that he deserves.
Joe works so hard to keep fit, he walks his beloved dog Nanooke as often as possible, he participates in the Park Runs, in fact, despite his condition he supports any fundraiser for other local organisations when possible, and has done the "Sleep Out for Midlands Simon Community" for a number of years.
Joe is an inspiration, and deserves the best quality of life possible. In the past 20 years, Joe has battled the loss of his Dad, his brother, his cousin and has shown great dignity while dealing with the diagnosis of HD and the failing health he has since endured.
We are calling on the HSE to provide a facility in which Joe can be given the quality of life that he deserves, a facility like the one in Bloomfield. To place Joe in an Old Folk's Home, would be detrimental to his health and to the quality of life he deserves as this disease progresses.
We are also calling on the HSE to provide this facility for the sake of his Mam Pauline, his sole carer, so that she too can have a quality of life, with the peace of mind knowing, that her son is in a facility which is providing the best care possible for him.
WE WOULD LIKE TO REITERATE THE FOLLOWING:
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