Cork-born toddler Alicja Nowicki — who is now two — was born with a rare and life-threatening illness which was so severe that baffled doctors warned her parents to expect theworst.
The toddler suffers from one of the most serious known cases of Charge Syndrome, a genetic disorder which affects just in one in every 10,000 babies worldwide.
In Alicja’s case, the illness — which has left her completely deaf, almost blind, unable to swallow, with breathing and heart problems and a deformed leg — was one of the worst ever on record.
Diagnosed with 14 major birth defects when she was just three weeks old, she came through the first of many seemingly insurmountable problems when she was rushed to hospital in Crumlin in Dublin for life-saving heart surgery.
Her parents Ania and Radek Nowicki, who live in Ballintemple in Cork, insist they now have every hope that their only child’s “incredible fighting spirit” will enable her in the coming years to finally be able to start leading as normal a life as possible.
They recently met a leading US-based surgeon, who assured them he would be able to reconstruct Alicja’s right leg and club foot — something that is all the more remarkable because, shortly after her birth, they were advised by doctors in Ireland to have the limb amputated.
That means that Alicja could fulfil her parent’s dreams by walking for the first time when she is five.
Despite her debilitating condition, her proud parents believe all her handicaps can be overcome and devote every moment of their lives trying to find effective cures.
Ania, 32, originally from Wroclaw in south-western Poland, admitted her daughter’s illness took them by complete surprise when she was born.
“I had no idea the day I went into Cork University Hospital to have Alicja, because nothing had showed up on the scans.
“But when we realised how many problems she had, it was devastating. She couldn’t see, hear or eat on her own.
“I was hearing nothing positive from the consultant and was told to take things day by day. It was such a low point, because I thought she would have no quality of life and if she lived, she’d be bed-ridden for the rest of her life.”
Ania describes her daughter as “a real fighter”.
“She will always require medical treatments, but we know she can get through anything and we know our dreams that she will one day be independent and have a real quality of life are on the verge of becoming a reality,” said Radek, 33.
For more information, including details of how to donate to help improve Alicja’s quality of life, see alicja.org.