Séanín battles to recover from lifesaving surgeries

October 31, 2016

The story of inspirational Belleek’s woman Séanín Smith’s incredible battle against the debilitating effects of a rare, incurable condition is one that has captured the hearts and minds of everyone in her local community and beyond. Since the 24 year old graduate was diagnosed with Ehlers Danlos Syndrome (EDS) back in 2013, the entire district has rallied to support her and the Smith family and the Fight On Campaign for Séanín has amassed an army of followers on Facebook.

Since Séanín’s life was turned upside down 4 years ago with the devastating diagnosis of EDS – an extremely rare and progressive condition which affects the skin, joints and muscles causing frequent strokes and seizures as well as affecting vital organs, the brave young woman has campaigned tirelessly to raise awareness of the condition and her family and supporters have fundraised around the clock to raise the money needed to pay for vital surgeries in the USA which were deemed her only hope of leading any semblance of a normal life.

With her precarious medical status ruling her out of flying, Séanín made the gruelling journey to America in June via boat, arriving in Maryland at the beginning of July, where she underwent a series of operations on her neck and spine.  As always she maintained her sunny disposition and positive outlook throughout and she received a huge welcome back to the family home in Belleek last month.  Recuperating at home, Séanín has been inundated with messages of support and her family are keen to update everyone on her recovery so far.

Speaking to The Examiner last week, Séanín’s devoted sister Louise revealed that her medical condition turned out to be more complicated than anyone realised when they arrived in America.

“Séanín had seven procedures carried out in the space of two weeks. She’s the first patient to have so much done in such a short space of time,” explained Louise.

“We were told that we were lucky we got Séanín to America when we did as things were so complicated with her that she wouldn’t be here today. With the added procedures, another diagnosis of an even rarer muscle wasting condition ‘Myasthenia Gravis’ and a hernia moving her diaphragm up into her chest restricting her breathing, things have not been easy for Séanín. Through it all, she has never complained, never let it get her down and never stopped smiling as she feels truly blessed to be here today,” she added.

Louise says the family were overwhelmed to discover just how complex Séanín’s condition was but they drew strength from the many uplifting messages of love and support they received.

“We cannot thank people enough for their kindness, generosity and support over the last few difficult months. It’s been amazing!” said Louise, who credits the outpouring of support and goodwill as the reason Séanín is alive today.

Louise revealed that the two week journey home for the States also took its toll on Séanín’s fragile health and since returning home her recovery has been incredibly difficult.

“She is in a great deal of pain and is unable to do much. Although her legs have got stronger and her mobility is much better, the new diagnosis of Myasthenia Gravis is leaving her with power loss and days when she can’t move. She is trying to walk when she is fit to build her muscles up as best she can.  With the added hernia problem, she is having flare ups which cause her to nearly lose consciousness at least once a week and then we found out she has multiple gall stones which could be lodged, meaning she will need further surgeries for these problems.

“Séanín has lifelong conditions that have no cure and unfortunately you just have to deal with each problem as it arises,” admits Louise.

“A lot of people have asked us since America ‘is she not fixed yet?’ We truly wish we could say the surgeries were a quick fix but that is not the case. Ehlers Danlos Syndrome is a condition which can cause you problems at any time and with so many people in Ireland and the UK suffering from this, it is so important to raise much needed awareness of this invisible illness.

“Like many others, Séanín had been told by doctors for years it was all in her head and dismissing what she was suffering through. Just because someone doesn’t look sick, doesn’t mean they aren’t!

“After all, would you believe this girl has had her skull fused to her spine, a piece of her skull removed to allow room for her brain, her brainstems decompressed and screws and plates to ensure her head doesn’t continue crushing her neck?”

We at The Examiner join the rest of the community in wishing Séanín well in her continued recovery and in all her future endeavours.