June 2018 Irish Mirror
A brave Irish girl, who doctors have described as a “medical marvel”, had a key operation in the US to safeguard her greatest passion - walking. Alicja Nowicki, nine, suffers from one of the severest-known cases of Charge Syndrome, a rare genetic disorder that doctors feared gave her little hope of survival at birth. The illness, which is believed to be one of the worst of its kind on record, has left her with 14 major health issues, including an inability to swallow or smell and breathing and heart problems. But the Cork youngster, who has very limited vision and who was born deaf, has continually defied the odds, coming through the first of many seemingly insurmountable problems when she was rushed to hospital at just three-weeks-old for life-saving heart surgery.
Alicja Nowicki after her recent operation in Turkey to receive a cochlear implant
Much of her life since has been spent undergoing complex medical procedures, most recently in March in Turkey where she successfully received a cochlear implant in her right ear, which has already started to show signs of improving her limited hearing.
Anna, 39, who has travelled from her Ballintemple home to Florida with Radek and youngest daughter Nadia, two, to be at Alicja’s side, explained: “Alicja had major reconstructive surgery on her right leg at this same hospital a few years ago, because she had no tibia, no ankle joint, half a knee joint and a club foot.
Anna and Radek Nowicki, from Ballintemple in Cork with their two daughters - Alicja, nine, and Nadia, two
“The operation enabled her to walk for the first time, and since then walking really has become her greatest pleasure in life. She can’t walk very far, but when she does take a few steps she’s at her happiest. For her it really is her passion, the thing she loves more than anything else. “But unfortunately that same leg has been twisting in the wrong direction, and so she needs corrective surgery, without which her limb will be irreversibly damaged, and would likely result in her losing her leg in a year or two and never being able to walk again.”
Anna paid tribute to the Irish public, who have helped raise tens of thousands of euros towards the non-HSE funded operation. She said she expects to spend a number of weeks at the specialist Florida facility to allow Alicja to avail of post-operative care and physiotherapy. She added: “The people of Ireland have been so generous over the past years and we will be forever in their debt, because without their donations it wouldn’t have been possible to get Alicja all the medical treatments she has needed.”