Seanin Smith is facing a TWO-WEEK trip to get treatment in Maryland for the rare condition she’s been fighting since 2013
Stunning Séanín Smith may be just 23, but she has suffered more health problems than many people do in a lifetime.
The Co Armagh woman was diagnosed with a condition called Ehlers Danlos Syndrome (EDS) in 2013.
Séanín has since been hospitalised countless times after suffering multiple strokes.
She has had to learn how to walk again four times and now uses a zimmer frame because of the crippling condition.
The progressive incurable disease affects the skin, joints and muscles causing frequent seizures as well as affecting vital organs.
But the inspirational young woman from Belleeks has not let it stand in her way and graduated from the University of Ulster with a Bachelor’s degree in Nutrition.
She has also enrolled in a Masters which she is keen to complete when she is well.
Speaking to Belfast Live, Séanín described “everyday as a battle through the ongoing pain”.
“Every morning I get up restless due to late nights as I know I will not be able to sleep with my pain,” Séanín added.
“After breakfast I could sit at the table for hours from the pain of eating or from migraines or dizziness.
“It could take me hours to get myself washed and dressed just to go and sit on the sofa.”
The rare occasion that Séanín gets out of the house normally revolves around hospital appointments, which proves incredibly difficult for her.
Séanín said: “A typical day at the hospital means loading up the car with oxygen tanks, my wheelchair and my zimmer frame. My mum also prepares a lunch as I cannot eat out due to my special diet.
“Even a small trip to my local GP’s is tiring and time consuming, wearing my uncomfortable neck brace to support my head and lying down flat in the car.”
As the condition grips Séanín, her family continue to raise awareness of the illness and much needed funds for treatment which can only be carried out in America.
The “Fight On” Campaign on Facebook was set up three years ago by her family and has garnered huge support across the country.
Her sister, Louise, told Belfast Live that the family had initially thought Séanín could receive treatment in London however a leading neurosurgeon advised them her condition is too complex and she will need to travel to America.
Louise added: “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 a very difficult time so this surgery in America will hopefully alleviate some pain for her.”
However, getting to America poses another problem as the young student cannot fly so she will spend two weeks travelling to the States with her parents for the surgery.
Séanín will get the boat to Southhampton where she will spend a few days and from there she will sail to New York.
From New York the family will have to make their way to Maryland which is another four-hour drive away.
In Maryland an expert Professor in Séanín’s condition will carry out extensive tests ahead of surgery.
Louise, along with the rest of the Smith family, welcome any new members to the Fight On campaign to help with fundraising efforts.
She urged: “If anyone can help in anyway with upcoming fundraising or can give us new and exciting ideas, please get in touch.”