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THE PARENTS of a brave child with one of the rarest conditions in the world have said they are “overwhelmed” with the support they have received, both locally and around the world and determined to find a cure.
Ciara and Billy Nicholl, who live at Cradien, outside Enniskillen, are parents to seven-year-old Ellie, who has a slow progressive neurological condition known as H-ABC (Hypomyelination with atrophy of the basal ganglia and cerebellum) Syndrome.
The condition means that Ellie is unable to walk or speak and has bad dystonia; uncontrollable movements of her body.
At the time of her diagnosis on March 16, 2012 Ellie was only the 22nd person in the world with the syndrome and remains the only patient in Ireland. Since that day parents Ciara and Billy have undertaken 24 hour care for little Ellie, with the last 10 months particularly difficult. To help with her dystonia Ellie underwent a surgical procedure known as Deep brain stimulation (DBS) in October, but the treatment did not have the desired effect, with Ellie spending periods in the high dependency unit and intensive care.
The DBS was then removed and Ellie, whose hip was displaced by 40%, had a correctional operation on her leg and a peg inserted for her to feed.
Ellie has been home now for two weeks and on Sunday afternoon her story reached the far side of the world after her mother posted on Facebook about a Fermanagh jersey presented to her from county player Conall Jones.
In the post Ciara explained that the faulty gene has been discovered for Ellie’s condition and revealed her plans to raise money to fund treatment and a cure.
€30 Per Entry for Prize of 2nr All Ireland Football Final Premium Tickets
Please include your name & contact details
THE PARENTS of a brave child with one of the rarest conditions in the world have said they are “overwhelmed” with the support they have received, both locally and around the world and determined to find a cure.
Ciara and Billy Nicholl, who live at Cradien, outside Enniskillen, are parents to seven-year-old Ellie, who has a slow progressive neurological condition known as H-ABC (Hypomyelination with atrophy of the basal ganglia and cerebellum) Syndrome.
The condition means that Ellie is unable to walk or speak and has bad dystonia; uncontrollable movements of her body.
At the time of her diagnosis on March 16, 2012 Ellie was only the 22nd person in the world with the syndrome and remains the only patient in Ireland. Since that day parents Ciara and Billy have undertaken 24 hour care for little Ellie, with the last 10 months particularly difficult. To help with her dystonia Ellie underwent a surgical procedure known as Deep brain stimulation (DBS) in October, but the treatment did not have the desired effect, with Ellie spending periods in the high dependency unit and intensive care.
The DBS was then removed and Ellie, whose hip was displaced by 40%, had a correctional operation on her leg and a peg inserted for her to feed.
Ellie has been home now for two weeks and on Sunday afternoon her story reached the far side of the world after her mother posted on Facebook about a Fermanagh jersey presented to her from county player Conall Jones.
In the post Ciara explained that the faulty gene has been discovered for Ellie’s condition and revealed her plans to raise money to fund treatment and a cure.
Organizer
Finbar McGrath
Organizer