The Derry family of a baby diagnosed with a rare and fatal brain condition have organised a number of fund raising events to help fund 24 hours care for the ten month old.
Conor Toner, who lives in Dublin with his parents, Deirdre and Richard, was diagnosed with the extremely rare genetic condition Gaucher’s Disease Type 2 in September.
It has been more than ten years since a child in Ireland was diagnosed with the disease and there is no treatment or cure available for it.
In the last few weeks Conor’s condition has deteriorated and he requires round the clock care. He and his parents are having to spend what little time they have left together in hospital as there is no funding in place to provide 24 hours care for him at home.
The life expectancy for a child with Gaucher’s Disease is two years, however Richard and Deirdre have received the devastating news that they may lose their only child within months.
He has lost the ability to swallow and requires a feeding tube, oxygen and constant nebulisers and medication.
Conor’s family in Derry want to help raise €20,000 to allow the little boy to go home for good,
Local woman Catriona Kerrigan, who is Conor’s cousin, has organised a sponsored spin tomorrow night to help raise funds. The spin has been organised with the help of Thomas McCallion and it will take placat 7pm at the Templemore Complex. It costs £20 per bike.
Catriona told the ‘Sunday Journal’ the news about Conor, who is such a happy baby, has been devastating to all the family.
The family have also organised a charity quiz on November 22 at the AOH Club, and an afternoon tea at Steelstown GAA on November 15.
For more information or to find out how to donate go to www.facebook.com/bringbabyconorhome or contact Catriona on 07511770134.