BELLE’S BRAVE BATTLE
Tuesday, 8 April 2014
THE family of a Belleeks woman who is battling a rare genetic disorder, which has had a devastating impact on her health, are appealing to the community to help their fundraising efforts to treat her condition.
Séanín Smith, daughter of Louis Smith and Mary Tully, is described by her sister Louise as "intelligent, outgoing and beautiful" but behind closed doors she is battling a debilitating illness.
Growing up the 21-year-old was a member of the Sheridan Stage School, competing in many festivals and performing in numerous shows in Newry Town Hall and The Grand Opera House.
Séanín, who is sister to Louise, 24, and Tara, 19, also had a great interest in swimming, and qualified as a lifeguard with the Irish Water Society. Despite of all this she still managed to do her bit for her local community and was formerly named Belle of South Armagh.
Two years ago, while studying for a degree in Human Nutrition at the University of Ulster, Séanín was a volunteer in the Stroke Ward and a student nutritionist in the Dietetics Department in Daisy Hill when her whole life was turned upside down.
She was diagnosed with Macular Degeneration, a disease usually affecting people over 60 and as a result of this has lost the central vision in her right eye.
She was then diagnosed with Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder that affects the collagen in the body. Séanín is also currently being tested for an extremely rare genetic condition that affects the elastin in the body called Pseudoxanthoma Elasticum (PXE).
Speaking to the Democrat, Séanín's sister Louise explained: "Séanín has been diagnosed with type three hypermobility, however it has been thought she may have type four vascular or possibly a new type. EDS can affect individuals in a multitude of ways, from having a wider range of joint movement than usual, joint dislocations and subluxations to more severe problems with the organs.
“This unfortunately is an issue Séanín knows all too well. Over the past 18 months, she has been hospitalised 12 times, with her health continuously deteriorating. She suffers from gastro-intestinal problems, under active bladder, abnormalities with the heart valves, respiratory difficulties, circulation problems, migraine aura, old Scheuermann's disease, non epileptic seizures and blackouts as well as and strokes.
“Séanín's health has been deteriorating rapidly this year, with her being in and out of hospital four times in the past two months. In January, Séanín's conscious and oxygen levels dropped so low she ended up in a coma. Her seizures couldn't be controlled and as a result was ventilated, on life support and rushed to the Intensive Care Unit in Craigavon.
“After spending 10 days in hospital she was released, only to end up back in hospital two days later after suffering a mini-stroke. Her mobility was greatly affected after this and she had to learn how to walk again - the third time this has happened in the past 18 months. Séanín was alternating between a wheelchair and a zimmer frame and undergoing an intense rehabilitation programme. She had been making great progress with her walking only to have another setback, ending up in the High Dependency Unit, Daisy Hill Hospital two weeks ago, before being transferred to the Neurological Ward at the Royal Victoria Hospital.
“The problem Séanín faces is that doctors and consultants do not have the knowledge or understanding to deal with her condition, simply deeming her as 'unique'. The health system here in Northern Ireland is not equipped to deal with complex cases such as Séanín's, forcing her to seek help abroad.
“We have found a specialist private clinic in London who may be able to offer treatment but Séanín has been told she would be at high risk if she were to travel, and so she requires medical support on her journey. Due to the large costs, our community has come together and formed 'The Fight on Campaign for Seanín' to fundraise for her treatment. Not only is it important to raise money for Séanín to get her the help she needs, it is vital to highlight the need for educating the medical profession in Northern Ireland to be equipped to treat rare condition sufferers.
“Séanín has suffered dramatically over the past couple of years with her life now being barely recognisable. Though through all of this, Séanín has never complained, never asked 'why me?', instead she puts a smile on her face and gets on with it. Her determination and strength to fight on cannot be underestimated. She is a true inspiration."
A number of fundraising events have been organised for 'The Fight On Campaign for Séanín', including The Hunt for the Hunk at the Canal Court Hotel on Friday, June 13, tickets are priced £10 for event which starts at 8pm and is followed by music from The Nooks.
On Easter Sunday a Tractor and Vintage Car Run will take place in Belleeks at 2pm. Everyone is welcome to attend the event which includes a raffle and music in Tully's Bar.
To help with the fundraising efforts please follow Séanín's campaign on www.facebook.com/fightonseanin and www.twitter.com/fightonseanin.
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