Fundraising stepped up for brave Séanín

June 6, 2016

Brave Belleeks girl Séanín Smith sets off on a life-saving journey to America later this month, where she will undergo vital surgery to repair the cranial instability she has developed as a result of her debilitating condition, 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. Having endured countless hospitalisations and  huge medical setbacks since her diagnosis, the 23 year old now faces the arduous journey to the US by boat as she is not medically fit to fly.

Séanín will begin her journey on June 20th when she leaves Belfast on the boat to Liverpool where she will travel by train to Southampton.  From there she will board a ship to make the nine day crossing to New York and then on to Maryland where she will meet top US neurosurgeon, Professor Henderson, who will carry out the fusion stabilisation surgery.

In order to fund her two week trans-atlantic trip and surgery the Smith family have embarked on a concerted campaign to raise the remaining £50,000 needed to add to the £50,000 already raised through the Fight On Campaign for Séanín. This month and next will see a host of fundraising events taking place including a main event fundraiser in the form of an epic “Lip Sync Battle”, set to take place in Newry’s Canal Court Hotel on Friday 24th June.

The Smith family hope the local and wider community will turn out in force for the upcoming fundraisers to help the inspirational young woman regain her quality of life.

Anyone who would like to support the Lip Sync Battle or volunteer for other fundraising events can get in touch with the Fight On Campaign via email or via the Fight On Facebook page.

A schedule of upcoming fundraising events is as follows:

Saturday 11th June – Tesco Bagpack Newry from 11am to 7pm.  Volunteers needed – get in touch via facebook page or email to book an hour slot.

Sunday 19th June – Tractor Run, Belleeks beginning at 2pm.

Friday June 24th – Lip Sync Battle, Canal Court Hotel at 8pm

Friday July 1st – 28 hour Spinathon, Haldane fisher Newry, beginning at 8am and finishing at 12 noon on Saturday July 2nd.

Breakfast morning both days.  Contact Haldane Fisher on 028 3031 6676 (Colin Johnston) or email to book a time slot or to help in any way. £10 per cycle per hour.

Sunday July 3rd – Ravensdale Ramble beginning at 2pm.

Donations can be made online via