WHEN Radek Nowicki cradles his three precious daughters in his arms, he is the happiest man in the world.
He is the proud father to Alicja, aged 10, Nadia, four, and latest arrival, Ida.
“Ida was born on Easter Sunday,” says Radek, of Boreenmanna Road, Ballintemple.
“She wasn’t due for another two weeks. Her older sisters, Nadia and Alicja, adore her.”
Mum, Anna, agrees.
“When I was pregnant with Nadia, I had some anxiety around her birth,” she says.
“After she was born, Nadia was spoilt, to be honest. Now baby Ida is being spoilt by us and by her two sisters!”
The Nowicki’s eldest daughter, Alicja, was born to her Polish parents in Cork just over ten years ago. She suffers from the most serious known case of Charge Syndrome, a genetic disorder which affects just 10,000 babies worldwide. Radek is her main carer.
Alicja’s big blue eyes are fringed with long, luscious lashes, but she can’t blink. When I last met her, on her sixth birthday, those blue eyes were shining with sheer joy when she saw her Peppa Pig birthday cake.
“Even if she isn’t independent, emotionally, she isn’t a child any more, now she is 10 years old,” says Radek proudly.
“She is slowly becoming a beautiful young girl.”
Little girls grow up quickly.
“It is hard to believe that Alicja has been with us so long already,” says Radek.
“It’s been 10 years since our world fell apart as our first-longed for baby was born very sick and doctors suspected that she would be totally incapacitated with very limited contact with the world.
“Thankfully, not all those dark scenarios became facts.”
When she was born, Alicja had little chance of survival.
Now she is thriving, surrounded by the love of her mum and dad, who make sure their precious little girl has the same life opportunities as her sisters.
“It all came as a complete surprise to us,” says Anna, remembering the birth of her first daughter in 2009.
The little baby suffered birth defects which affected her sight, her hearing, her breathing, and her swallowing. Alicja was also born with a deformed right leg and a club foot. The tot underwent crucial life-saving heart surgery at just three weeks old.
“Nothing showed up in the scans and when we realised that Alicja had been born with a total of 14 defects, we were devastated,” says Anna.
“She couldn’t suckle either. The nurses fed Alicja my breast milk through a feeding tube.”
The doctors told the Nowickis that their only option was to amputate Alicja’s right leg.
Anna and Radek must be really proud to see her walk upright today?
“It is wonderful,” says Radek. “Alicja had no tibia, no ankle joint, only half a knee joint and a club foot. The doctors saw her only chance of walking in later years with a prosthetic limb in place.”
The first months after Alicja’s birth were difficult. The young couple had to come to terms with supporting their daughter as best they could.
“After lots of hard work and therapy, Alicja can reach her milestones, even if that that can take much longer than any other child,” says Radek.
“We kept fighting for her and have managed to achieve goals that even, according to most doctors, were impossible. We have taken her for a year-long leg treatment to the USA to save it from amputation and to allow her to stand on her own two feet and walk.”
Radek and Anna ensured Alicja got the best treatments possible, fundraising tirelessly for their daughter.
“Alicja was also treated in Italy and then Turkey as that was the only way to enable her to hear and understand speech.”
The lengths the parents were determined to go for Alicja took all of their mighty strength, and strong will, which helped the couple gain momentum along the way.
“I was so happy when Alicja was born,” recalls Radek. “It didn’t sink in at first that she had so many problems. I didn’t even notice her deformed leg at first.”
The dedication of Alicja’s mum and dad is paying off.
“Even if most of our little girl’s life has been spent in treatment, we have eventually managed to introduce some normality to our family life,” says Radek.
“She is the best in the world; the best big sister.”
And Radek is one of the best dads in the world.
“The other day, my neighbour called to our door,” says Radek, smiling. “He said, ‘What do you do all day?’ I said, ‘How long have you got!’”
Can he tell me?
“I get up at 6.30am, give Alicja her breakfast, (she is artificially fed), give her the medications, brush her hair, put her back brace on before I put her on the school bus for school, St Paul’s Special School in Montenotte.
She loves St Paul’s. Alicja can’t tolerate some food, so I cook especially for her,” says Radek.
“When the school bus leaves, I leave for play-school with Nadia at 9am, who has also had her breakfast and her hair brushed. I put on a wash and tidy up around the apartment.
“These days, Anna is on maternity leave, so she is breast-feeding the baby. And Anna’s mother is here for a month helping us out.
“When Anna is back to work, then I’ll look after Ida full-time too, feeding her, changing her, bringing her to the GP for her check-ups. Then there are the physiotherapy appointments to attend with Alicja.”
“Yes, I fit that in before dinner time, and then I get ready to cook dinner for everyone. In the evening, I am busy with paperwork do to with Alicja’s ongoing treatments.”
It’s full on.
“I don’t think about it,” says Radek. “There’s not much free time, or ‘me’ time. But that’s OK.
“It is what I do. I spend a lot of time encouraging Alicja to stand up and walk around. Sometimes she loses confidence and sits on the floor on her bum the whole day.
“As she is getting older, it seems she is more aware of her disability. We try and boost her confidence,” says Radek.
Alicja loves her cartoons and she is a book lover.
“She is beginning to recognise sounds and how to respond.” says Radek.
A visit to the park with her younger sisters is a favourite pursuit.
“We all wrap up and take a stroll in the park at the weekend,” says Radek. “The fresh-air does us all good.”
Alicja, during the first decade of her life, has gone through numerous surgeries.
“There were a lot of problems to address,” says Radek.
“The fight for our daughter’s health and wellbeing continues. Her vision is deteriorating, and there is a possibility that Alicja’s reconstructed leg may require more surgeries, issues with gastronomy and feeding need to be addressed.
“We really hope that two therapy camps that we have planned for Alicja this summer will help her regain her physical and emotional strength.”
The hopes and dreams that Anna and Radek had as a young couple have been taken over by the hopes and dreams they have for Alicja, their first-born, and their other daughters.
“It was like a bad dream at first, when you are willing yourself to wake up,” says Radek.
“Fortunately, we had a lot of support both here and back in Wroclaw in Poland. Anna’s company, Cork-based call company, Starwood Hotels, are a continuing source of support.”
What is Radek’s and Anna’s biggest dream for Alicja?
“Now she is 10 years old, we don’t have a bigger dream, but for her to be the healthiest and happiest possible.”
Radek’s girls, his dream girls, will spoil him for Father’s Day next month.
“I am so proud of my three girls,” says Radek. “I think that there will be a nice cake baked for me for Father’s Day. “
To donate to Alicja’s on-going treatment, see https://www.gofundme.com/help-alicja-charge