Newspaper for Crossmaglen, South Armagh, Newry and Down.

Séanín campaign stepped up ahead of vital US surgery

The family and friends of Belleek’s woman Séanín Smith have stepped up their fundraising campaign in order to secure vital surgery in America for the 23 year old, whose fragile health has continued to suffer serious setbacks in the last number of months.

In 2012 Séanín was diagnosed with a rare and debilitating condition known as Ehlers Danlos Syndrome (EDS).  The progressive and incurable disease affects the skin, joints and muscles causing frequent strokes and seizures as well as affecting vital organs.

She has been hospitalized countless times and has faced huge medical setbacks since her diagnosis, but the inspirational young woman has braved it all with an infectious positivity and determination, with her devoted family and friends by her side.

Over the last six months, Séanín’s condition has deteriorated rapidly and has been told she urgently needs fusion stabilisation surgery to repair the cranial instability she has developed, which has left her unable to support her head.

Her sister Louise told The Examiner that the family had initially hoped Séanín would be one of the first EDS patients to undergo the surgery in the UK but, unfortunately, a leading neurosurgeon has advised that her condition is too complex and she will need to travel to America for the procedure to be carried out by one of the top neurosurgeons in the world, Professor Fraser C. Henderson.

Advised not to fly due to her complex medical conditions, Séanín has recently received the fantastic news that, after months of research and communications, Professor Henderson will meet with her at the beginning of July, and she will sail to New York before travelling on to Maryland for extensive tests ahead of the surgery.

The ‘Fight On’ Campaign set up two years ago has garnered huge support across the country and with the generosity of the local and wider community, it has raised much needed funds enabling Séanín to travel to London’s Hypermobility Clinic at St. John and St. Elizabeth’s Hospital where consultants have finally begun to understand her myriad of EDS-related health problems.

Louise says the news that Séanín will be treated in America has prompted her family and friends to step up their fundraising campaign to help meet the significant medical bills that lie ahead.

Describing her sister’s present condition, she explained: “Séanín has lost an inch in height as her skull has sunk downward onto her spine over the last few months. Due to this, her other health problems have dramatically worsened and she has had very difficult week, suffering prolonged bouts of unconsciousness, seizures and breathing difficulties.

“She is wracked with pain throughout her body, including chest pains and pressure in her eyes. We can only hope Séanín gets a break soon and is able to prepare herself for the extremely difficult journey she has to make and the extensive testing that lies ahead of her.

“We are hoping new members will come on board our committee and help with the fundraising that lies ahead. Our next committee meeting will take place on Thursday 14th April in Tully’s Bar, Belleek at 8pm. If anyone can help in anyway with upcoming fundraising or can give us new and exciting ideas, please come along. We would love to see new faces, everyone is more than welcome,” she added.

In response to an unprecedented demand from supporters wishing to make a donation to the Fight On Campaign for Séanín, the family has set up a Justgiving crowdfunding page to receive donations.

“We are urging people to show support as we try to meet a target of £100,000 to cover the consultations, testing, surgeries and medical bills that lie ahead,” said Louise.

“Séanín desperately needs to get to America to receive treatment from experienced and knowledgeable doctors who understand all of her conditions. We would very much appreciate it if you could donate whatever you can afford to improve Séanín’s quality of life.”

The Smith family hope that Séanín’s appearance in a new “Medical Mysteries” TV series beginning on Channel 5 this week will also help to raise awareness of her sister’s everyday struggle and fight for life and generate even more support for their fundraising campaign. The series begins on Channel 5 this Thursday 24th March at 8pm and Séanín will feature in the programme on Thursday 12th May.

To donate to the Fight On Campaign for Séanín visit the justgiving crowdfunding page at