Séanín Smith, daughter of Louis Smith and Mary Tully, is an intelligent, outgoing and beautiful 22 year old girl from Belleeks, who behind closed doors suffers from a debilitating illness. Growing up Séanín was a member of the Sheridan Stage School, competing in many festivals and performing in numerous shows in the Town Hall, Newry and The Grand Opera House, Belfast. Séanín also had a great interest in swimming, accomplishing as a lifeguard through the Irish Water Society. With all of this, she still managed to make time to offer her services in her local community of Belleeks and in recent years represented her village in the Belle of South Armagh. Whilst studying a degree in Human Nutrition at the University of Ulster, Coleraine, Séanín was a volunteer in the Stroke Ward and a student Nutritionist in the Dietetics Department, both in Daisy Hill when her whole life was turned upside down. Séanín was diagnosed with Macular Degeneration 2 years ago, a disease usually affecting people over 60. As a result of this, she has lost the central vision in her right eye. Séanín is currently being tested for an extremely rare genetic condition that affects the elastin in the body called Pseudoxanthoma Elasticum (PXE). In addition, she has been diagnosed with Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder that affects the collagen in the body. There are 7 different types of EDS and Séanín has been diagnosed with type 3 Hypermobility, however it has been thought she may have type 4 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 hospitalized 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 TIAs and strokes. Séanín’s health has been deteriorating rapidly this year, with her being in and out of hospital 4 times in the past 2 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, Craigavon. After spending 10 days in hospital she was released, only to end up back in hospital 2 days later after suffering mini-stroke. Her mobility was greatly affected after this and she had to learn how to walk again – the 3rd 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 last week before being transferred to the Neurological Ward, Royal Victoria Hospital, Belfast. 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’, nor do they communicate with each other to work in her best interests. 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. Her family 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 thus she requires medical support on her journey. Due to the large costs, her community have 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! To help with the fundraising efforts please follow Séanín’s campaign on
www.facebook.com/fightonseanin and www.twitter.com/fightonseanin.
