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Local Family raising funds for S.A.D.S

October 25, 2011

A Crossmaglen family is pulling together through a difficult time to raise awareness and funds for S.A.D.S, a charity involved in preventing loss of life from SADS (Sudden Adult Death Syndrome), highlighting cardiac risk in the young through to middle age and funding lifesaving equipment and research into SADS.

It is a cause particularly close to the hearts of the Hughes family, as they lost their 56 year old mother, Joan, in April this year, when she fell victim to this, largely unexplained, condition.  Their mother’s sudden passing sent shockwaves through the family and the local community as Joan was a much loved and popular figure in the area.  Her devastated husband and six children hope to highlight Sudden Adult Death Syndrome and its effects through positive fundraising events in Joan’s memory.

SADS is a much misunderstood cause of death that affects many families throughout Ireland.  It is an umbrella term which can sometimes be known as SCD – Sudden Cardiac Death, which is defined as “death due to natural causes within an hour of the onset of symptoms and assumed to have a cardiac cause.”

Every year almost 100 people die from SADS leaving the immediate family, and often the community devastated and searching for reasons as to why this happened. In the last few years, the condition has received extensive media coverage due to the untimely deaths of young sports players and high profile sports people in Northern Ireland. There are recommendations in place to reduce these numbers, including detection and assessment of those at high risk of SCD; systematic assessments of those engaged in sports and exercise; and reducing the time to response by way of emergency medical support or use of effective CPR and defibrillator usage.

Despite some public health initiatives, Geraldine Hughes, 24, Joan’s youngest daughter, says the lack of aftercare left her family feeling bereft, with practically no explanation of their mother’s death and lacking an adequate support mechanism.  She feels that dealing with such a sudden, unexplainable passing should warrant a dedicated counsellor or service to help families come to terms with their loss.  She also believes that the process of testing immediate family for genetic links to the condition could be vastly improved.

Her own experience meant that, despite the advice of the coroner that all family members should be tested as soon as possible, she personally waited 13 weeks to receive an appointment with a cardiologist.  Geraldine suggests that, instead of each family member seeking individual referrals to cardiology, a more efficient method would be that all family members are contacted automatically following a death through SADS and tested as a family by a SADS specific unit or cardiologist.  She also stresses that, as commendable as the mobile testing units are, not everyone will avail of the service due to the cost and Geraldine hopes that by raising awareness, some form of free testing can be set up in the future.

Geraldine found her mother after hearing her phone alarm go off and, on realising she could not rouse her, she frantically called on neighbours to help.  A neighbouring nurse performed CPR on Joan while they awaited a Cardiac Ambulance, which took some 40 minutes to arrive.  Unfortunately, the efforts of her neighbour and the paramedics could not save Joan, and the family were left reeling that their vibrant, energetic mother had gone to sleep that night and simply not woken up.

Geraldine explains how difficult it was to accept her sudden death as there had been no warning signs, no illness or underlying condition that they were aware of.  “She’d just had a great week off work” she says, “Mummy cooked for 20 of us on Sunday and was full of life.  It’s so hard to believe that I went to bed on Monday thinking that, the next day, my life would be the same.  To get up and realise Mummy had died – my whole world changed in a minute.”  Geraldine feels the pain of other families going through similar grief and confusion, especially young families left behind and families who have been devastated by the loss of a young person through SADS or SCD.

Knowing that so many are affected by this condition and that relatively little is being implemented by the health service to deal with it, has spurred the family on to organise fundraisers and charity events to highlight SADS and its wider implications.

The first event taking place is the S.A.D.S Charity Night being held in the Clarnagh Maid bar in Crossmaglen on 19th November. Geraldine has organised this night with the support of friends and family and, as she is a qualified Beautician, she and her team will be waxing for donations on the night! Everyone is invited to come along and get waxed in aid of S.A.D.S, at what promises to be a great night, with raffles and prizes to be won too.  All proceeds will go towards providing defibrillators for the local Youth Club.

The Hughes family are conscious that fundraising needs to be on-going for the cause and have more events in the pipeline, including the Santa Walk in Crossmaglen in December where proceeds will be donated to S.A.D.S.  In early 2012, there are plans for Joan’s friends and family to undertake a sponsored climb of Croke Patrick mountain.  Geraldine feels that the family and the community need to take something positive from Joan’s tragic death and they hope to achieve this by helping others affected by S.A.D.S as much as possible.

For further details on the charity night in Clarnagh Maid and upcoming events, please contact Geraldine Hughes on: 00353874133736 or email on xgerix87@yahoo.co.uk.

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