A girl who was told she had just four months to live as a baby has defied all odds, and is thriving a decade on.
Nicela Naudé was born with Klippel-Trénaunay syndrome – a rare congenital condition.
The disorder can result in malformations of the veins and an overgrowth of tissues and bones.
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In Nicela’s case, it has caused ‘tennis ball sized’ growths on the left side of her body and deformities on her left hand.
Her parents, Madelaine and Jacques, were delivered the heartbreaking news that she was unlikely to make it as an infant as a result.
But 10 years on, having battled over 20 surgeries, the brave young girl is thriving.
“This goes to show you what unconditional love can do – it takes you from four months to 10 years,” Madelaine, from Bothasig in Cape Town, said.
Life has been extremely difficult for Madelaine and her husband Jacques, and they have experienced many heart wrenching moments together.
They adopted Nicela from a children’s home in Cape Town when she was just three weeks old.
To date, she has had over 21 surgeries, with some lasting well over six hours, reports Need To Know.
Her treatment has aimed to de-bulk her growths, drain her lymph fluid, and remove affected tissue.
To this day, the growths continue to flare up.
Madelaine said: “She can wake up one morning and one has appeared on her hand or chest.
“Nicela is so brave but there are days when it becomes overwhelming for her.
“About a month or two ago, she started becoming emotional when she had to go to hospital for the umpteenth time to have blood drawn.
“She also had to get an injection in each finger which was very painful.
“It was absolutely heartbreaking to hear her scream.”
Back in 2020, Nicela was scheduled to have the growths removed from her lymph nodes and have them tested for malignancy – though they thankfully turned out to be benign.
She is now in grade four at a school with a strict anti-bullying policy – which was important for the family, as Nicela has struggled with feeling self-conscious looking different to her friends.
Madelaine said: “Every hospital visit is a traumatic experience but we’re raising her to be as confident as possible.
“We always tell her how special she is, how beautiful and smart she is, and how well she’ll do one day.
“We also tell her that although she may look different, everyone is actually unique.
“She doesn’t let it hold her back – she recently played in her first soccer match and says she had the time of her life.”
Nicela’s condition was explained to her classmates and their parents were given notes so they could help explain her condition further to their children if needed.
Her future does remain an ongoing cause for concern, and she is aware that she will have her condition for the rest of her life.
Klippel-Trénaunay syndrome has no cure and symptoms and complications are managed as and when they arise.
Bleeding as a result of vascular malformations and issues with the lymphatic system are among the more serious conditions associated with the syndrome.
Nicela is currently undergoing a new treatment – monthly sclerotherapy injections to treat her blood vessel and lymphatic system malformations and to shrink her growths and control their spread – which is proving successful.
Her mum said: “So far it’s working.
“Nicela hasn’t had any growths in the injected areas and no longer bleeds spontaneously.
“She’s also on chemo medication – doctors are seeing if it will help to suppress the growths.”
After Nicela was abandoned at birth, she was set for a life in foster care and children’s homes until the couple fell in love with her.
They met her at the home of a friend who was an emergency foster-care mum.
The couple, who both work in the South Africa Police Service, started making enquiries and social workers were able to track down the baby’s birth mother through social media.
They signed the adoption papers and a few months later, baby Nicela was theirs.
Madelaine added: “I always say if we didn’t have Nicela we would just have sat at home and stagnated.
“She keeps us young and makes us so happy.”
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