Seanín shines at Spirit Awards

June 2, 2014

By Christine Keighery

Belleek woman, Seanin Smith, was celebrating this weekend after her determination and bravery in battling the rare, degenerative condition, Ehlers Danos Syndrome (EDS) earned her a Spirit of Northern Ireland Award.

Seanin, who also celebrated her 22nd birthday last Thursday, beat off stiff competition from 15 worthy finalists vying for the award in last Friday’s glittering ceremony which took place in the luxurious five-star Culloden Estate & Spa resort in Holywood.  The inspirational young woman scooped the Overcoming Adversity award in recognition of her courageous fight to overcome the huge personal challenges she has faced since being diagnosed with the rare condition two years ago.

EDS is a lifelong progressive disease, thought to affect just a few hundred people in this country.  The disorder debilitates the physical strength of skin, joints and muscles and can vary from mild to life-threatening.  There is currently no cure so only supportive treatment and close monitoring of the condition can help with the frequent injuries and pain that develop.

Seanin has been hospitalised countless times and her health has deteriorated rapidly in the last year. Throughout it all she has maintained her sunny smile and positive outlook and, with the help of her devoted family, is committed to raising the profile of EDS and other rare conditions so that help and treatment may be sought for sufferers worldwide.

Her fight has captured the hearts and minds of everyone in her local community and beyond, and last Friday night, buoyed by the support of 17 family members who attended the star-studded event with her, Seanin tentatively stepped onto the stage at the grand final of the Spirit of Northern Ireland Awards to graciously accept her much-deserved accolade.

To rapturous applause, the modest 22 year old gave an emotional speech thanking everyone for nominating her for the special award and expressing her hope that winning the award would help to raise awareness of rare conditions, “get everyone talking about them” and spark research and treatment options.

Speaking to The Examiner following the flagship awards ceremony, sister Louise described the evening as a “fantastic experience” for Seanin and her family.

“Seanin just could not believe she won!” said Louise,

“She was shocked to even be nominated so we were all just completely overwhelmed and very, very happy,” she added.

Since her sister was diagnosed with EDS, Louise and her family have embarked on an extensive “Fight on for Seanin” fundraising campaign to raise vital monies to pay for Seanin to have specialist treatment outside of Northern Ireland and to raise awareness of EDS and other rare conditions.  Their crusade has been boosted by the Spirit awards with Louise providing numerous celebrities with specially made campaign armbands.  The campaign’s Twitter account has subsequently been inundated with celebrities tweeting selfies wearing the armbands and sending messages of support and congratulations.

“Seanin got a lot of support from some well known faces on the night and they have continued to show that they are all behind our campaign so hopefully this will really get us off our feet and boost the cause considerably,” said Louise.

“Seanin’s win has really raised awareness for anyone suffering with EDS and other rare conditions and we hope that continues to go from strength to strength.”

Full or praise for her courageous sister, Louise said,

“She is a true inspiration and this reward is a wonderful representation of this!”

Louise also thanked everyone for the tremendous support the family have received since the campaign began and made special mention of the local businesses who helped Seanin perfect her stunning appearance at Friday’s star-studded event.

“Seanin’s entire look was sponsored locally. Rosie’s closet sponsored her dress. Tan City did her nails, Belleza Beauty Salon did her tan and eyelashes and her hair was done by Identity Hair Studio.  The whole community has been so kind and supportive and we thank everyone from the bottom of our hearts” said Louise.

Seanin’s battle is far from over though, as Louise reveals that she now awaits the results of further genetic testing which may show that she is suffering from a second rare condition.  If so, this will mean Seanin will have to travel to America for specialist treatment.  With the air ambulance alone costing $75,000, the family will be stepping up their fundraising campaign in an attempt to raise as much as possible to help Seanin avail of vital treatment.

Sunday Life and Specsavers have rewarded an extraordinary person in Seanin. Her story has touched the hearts of people far and wide and hopefully her indomitable spirit will prepare her for whatever is ahead with the support of her family and wider community.  Louise’s hope is that the celebrity support they have received from Friday’s event will propel the campaign forward and help it gather even more pace to facilitate any necessary treatment Seanin may need.

To keep up-to-date with the Fight on Campaign for Seanin or to lend your support follow the group on Facebook and Twitter.

The Sunday Life Spirit of Northern Ireland Awards with Specsavers, hosted by UTV/U105’s Frank Mitchell and Pamela Ballentine, will be broadcast on UTV this Tuesday, 3rd June, at 8pm.