The family of a young Irish woman suffering from a devastating disease has set up a Facebook campaign to raise funds for treatment which can only be carried out in the U.S.
Séanín Smith, 23, from Co Armagh, is battling Ehlers Danlos Syndrome (EDS), a progressive, incurable disease which affects the skin, joints, vital organs, and muscles and causes frequent seizures. Since her diagnosis in 2013, Smith has suffered multiple strokes and and had to learn to walk again four times.
Despite these challenges, she graduated from the University of Ulster with a bachelor’s degree in nutrition last year and is now enrolled in a masters program.
She likened "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," she told Belfast Live.
"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."
She rarely leaves the house, and when she does, it is usually for a hospital appointment.
"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."
Smith’s family set up the “Fight On” Campaign on Facebook three years ago to raise awareness of the illness and to raise funds for treatment.
Her sister, Louise, said it was initially believed that Séanín could receive treatment in London, but a leading neurosurgeon told them her condition is too complex and she will need to travel to the U.S.
Louise said: "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."
Traveling to America is another problem because she cannot fly. Séanín and her parents will have to spend two weeks traveling to the U.S by boat from Southampton to New York.
Once in New York, they will have to make the four-hour drive to Maryland, where a specialist will carry out extensive tests ahead of surgery, the Irish Mirror reports.
Said Louise: "If anyone can help in anyway with upcoming fundraising or can give us new and exciting ideas, please get in touch."
You can donate to the Fight On Campaign here.