Terminally ill child ‘too sick’ to benefit from treatment
The parents of four-year-old Amelia Ryczan, from Co Monaghan, were told in recent days that their only daughter cannot be helped by the New York Cornell Medical Centre
The little girl is a sufferer of Battens disease, a rare neuro-degenerative condition that is known to affect fewer than a dozen children on both sides of the border.
While the condition is terminal in almost all cases, with sufferers usually dying before the age of eight, it had been hoped radical medical treatment in New York could lengthen her life.
However, after examining Amelia’s condition it has been confirmed that her illness has progressed too far for the specialist care to make any real difference.
Speaking on behalf of the little girl’s grief-stricken parents, Tamara and Damian, who are originally from Poland, Bee for Battens organisation spokesman Tony Heffernan said they were trying to make Amelia’s remaining time as positive as possible.
“She has progressed too far for the trial. I know exactly how they feel, the outlook is not good,” Mr Heffernan, who lost his daughter Saoirse to the condition in January.
Saoirse was the first child from Ireland to be screened for the medical trial in New York, but deteriorated before the treatment could begin.
Her brother Liam, who will turn three this Sunday, is to date the only non-US citizen to participate in the Battens disease trial and is said to be progressing well.
Meanwhile, Mr Heffernan has called on the Department of Health to increase the number of parents who are on the Government body’s national plan for rare diseases steering group.
The organisation is set to be established by the end of 2013 in line with EU regulations.
* Donations to Bee for Battens can be sent via the registered charity number Reg. CHY 19226. Further information available is at www.BeeForBattens.org.
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