‘Fight on’ campaign for Séanín

April 7, 2014

Séanín Smith is an intelligent, outgoing and beautiful 21 year old girl from Belleeks, who, behind closed doors, suffers from a serious debilitating illness, which is largely misunderstood in Northern Ireland. Her devoted parents, Louis and Mary, along with her two sisters, Louise and Tara have gone public with Séanín’s  battle against the misunderstood condition known as Ehlers Danlos Syndrome (EDS),  in an effort to raise funds for her much needed specialist treatment in London.

EDS is a rare 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 doctors think she may have Type 4 – Vascular or possibly a new strain of the condition. 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 and respiratory system.

These, unfortunately, are issues Séanín knows all too well. Over the past 18 months, she has been hospitalized 12 times for a range of serious problems related to her condition, including gastro-intestinal problems, under-active bladder, heart valve abnormalities, respiratory difficulties, circulation problems, migraine aura, old Scheuermann’s disease, non epileptic seizures and blackouts as well as TIAs and strokes.

Growing up, Séanín was an active member of the Sheridan Stage School, competing in many festivals and performing in numerous shows in Newry Town Hall and Belfast’s Grand Opera House. She was also an accomplished swimmer who achieved lifeguard status through the Irish Water Society. Whilst juggling her many interests and talents, 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.

In 2010, the ambitious beauty embarked on a degree in Human Nutrition at the University of Ulster in Coleraine. In 2012, during her placement year as a Student Nutritionist in the Dietetics Department of Daisy Hill Hospital,  Séanín’s whole life was turned upside down when she was diagnosed with Macular Degeneration, a disease usually affecting people over 60. As a result of this condition, she has lost the central vision in her right eye.

In addition, Séanín was diagnosed with Ehlers Danlos Syndrome and is also currently being tested for Pseudoxanthoma Elasticum (PXE), an extremely rare genetic condition that affects the elastin in the body.

Séanín’s health has been deteriorating rapidly this year, with the brave young woman having been hospitalised 4 times in the past 2 months.

In January, doctors could not control her seizures and as a result Séanín was ventilated, placed on life support and rushed to the Intensive Care Unit, Craigavon. She spent 10 days in hospital before returning home to her family – only to return to hospital 2 days later after suffering a mini-stroke.

Her mobility was greatly affected and, for the third time in 18 months, the previously fit and active young woman had to learn how to walk again. Alternating between a wheelchair and a zimmer frame and undergoing an intense rehabilitation programme,  Séanín had been making great progress only to suffer another medical setback last week which sent her to the High Dependency Unit in Daisy Hill Hospital before being transferred to the Neurological Ward of the Royal Victoria Hospital, Belfast.

With her health continuing to worsen after numerous setbacks, Séanín faces the added hurdle that doctors and consultants in Northern Ireland do not have the knowledge or understanding to deal with her condition.

According to her heartbroken family, the situation is compounded by the fact that consultants and medical practitioners treating Séanín are failing to communicate with each other to work in her best interests.

As the Health System here in Northern Ireland seems ill-equipped to deal with complex cases such as Séanín’s, her family have been forced to seek help elsewhere and have found a specialist private clinic in London who may be able to offer treatment.

Séanín has been told she requires full medical support during her journey to London. Due to the large costs of providing such support, her family, friends and local community have come together to form ‘The Fight on Campaign for Seanín’ to help raise funds to pay for her medical support and 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” says Séanín’s sister Louise, adding,

“Séanín has suffered dramatically over the past couple of years with her life now barely recognisable from the one she used to live. Through all of this though, 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!”

One of the first major fundraisers to take place for the campaign is a “Hunt for a Hunk” event in Newry’s Canal Court Hotel on 13th June.  Details have not been finalised yet but it promises to be a great night’s entertainment with local band The Nooks playing afterwards and lots of raffles and auctions taking place too.

Louise revealed that this event is right up Séanín’s street and one she has given her full support to!

“We always used to joke with  Séanín about her love of hunky men so she’s definitely right behind us in organising this particular fundraiser,” says Louise.

The fundraising group hope to get a t least 10 hunks to take part in June’s event so have invited any interested hunks to visit the campaign’s facebook page or twitter account to make themselves known. With committee meetings every week further fundraising ideas and events are also in the  pipeline, including a Tractor and Vintage Car Run in Belleeks on Easter Sunday at 2pm, followed by quiz nights, cake sales and much more.

To help with the fundraising efforts and find out more  about upcoming funraising events follow the Fight On for Séanín campaign o and