Nicela Naudé’s Journey: From Abandonment to Love and a Brave Fight Against a Rare Disease

Nicela Naudé, affectionately known as Nikki, is a 10-year-old, grade 4 student at Riverside College in Cape Town. She entered the world under the shadow of abandonment. Born from an unwanted pregnancy 2014, her biological mother chose not to see her or even learn whether she had given birth to a boy or girl. Left alone at Groote Schuur Hospital state hospital, Nikki faced a bleak future, compounded by her diagnosis of Klippel-Trenaunay-Weber Syndrome. This rare condition, affecting just 1 in 100,000 people, caused severe lymphatic and vascular malformations on the left side of her body. Tumours weighing up to 1 kg grew on her chest, and her left arm and hand were deformed. Her life expectancy was heartbreakingly estimated to be only four months.

But Nikki’s story was destined for a miraculous turn. Jacques (51) and Madelaine Naudé (52) , two dedicated officers in the South African Police Service in Elsies River and Bothasig respectively, learned about Nikki through a mutual friend, 60-year-old Karin Noonan. Without hesitation, they began the adoption process, driven by a profound desire to provide her with a loving home. They didn’t have much, but they promised to share whatever they had with Nikki. They envisioned a life filled with siblings, pets, princess parties, and endless love.

‘It was heartbreaking to see a fragile little girl lay there with big eyes and knowing she has nothing in life. A mother who didn’t want her and a life threatening disease. She was beautiful and we loved her instantly. When we heard that no-one was prepared to adopt her because of her short life expectancy we decided that we can give her a chance in life with a loving family for as long as she has to live. We had nothing to lose but so much to gain by loving this precious child that God had gifted us’ says mum Madelaine.

On March 16, 2024, Nicela celebrated her tenth birthday. She is now a beautiful, spontaneous, and happy little girl who adores dogs and make-up. Despite undergoing eight complex debulking surgeries, which aim to improve her quality of life, her condition remains incurable. The surgeries have become increasingly dangerous as the affected tissue has infiltrated her muscles and nerves. Future surgeries risk leaving her without the use of her hand.

‘Nicela is a vibrant, beautiful little girl who is raised with buckets full of love and confidence. She is top of her class at school and loves her school concerts where she has been leading lady for the past 2 years. She is loving and kind and shows empathy for others. She always wants to help people, even from a very young age. She also intends on opening an animal shelter when she is older’ dad Jacques tells us.

However, hope has emerged. Nicela has been referred to vascular surgeon, Dr Laura Redman, at the Christiaan Barnard Memorial Hospital, who will take over her treatment from Professor Frank Graewe. A promising procedure called sclerotherapy will be attempted. This procedure involves injecting 90% alcohol into the affected areas to shrink the tumours, which have now started forming bones. She has also been prescribed a chemotherapy drug, Sirolimus, to aid in the treatment. Her arm and hand are heavy, causing her lower arm to bend and appear shorter than her right arm. Nicela will need to undergo this procedure for the next six months, costing R71,000 per month, with medication adding another R4,000 per month. Unfortunately, their medical aid does not recognize her condition, covering only a fraction of the expenses.

‘Nicela is flourishing under the care of Dr Laura Redman. She is currently undergoing
sclerotherapy once a month under anaesthesia as it is a very painful procedure with 90% alcohol injections into the tumours to help shrink and hopefully slow the growing process. It is all still very traumatising with all the blood tests, x-rays, several debulking surgeries and now the sclerotherapy. A total of 21 surgeries.’ explains Madelaine.

Despite the financial strain, Jacques and Madelaine are determined to give Nikki the best life possible. They have taken out a second bond on their home to cover the costs, with their medical aid only covering R12,000 out of R140,000 in medical expenses. Yet, the results are encouraging. Nicela has already undergone two procedures and shown significant improvement. She feels beautiful and is excited about the possibility of looking “normal” one day. She has even vowed not to cry anymore when blood is drawn, understanding it is part of her journey to getting better.

‘Nicela’s sclerotherapy is a very costly procedure and her medical aid only covers a fraction of the cost. We have tried to get gap cover but unfortunately they do not cover pre-existing conditions. A procedure is R71 000 at a time. Nicela is also prescribed chemo medication to help keep the tumours at bay at a monthly cost of R3900 which the medical aid does not cover because it does not fall under their prescribed medical benefits. The donation that we receive will go towards all of Nicela’s medical expenses’ says Jacques.

Now, they need your help. This courageous family should not have to halt treatment due to financial constraints. To help alleviate the financial strain that they are facing the family has started a BackaBuddy crowdfunding campaign where they have already raised over R100 000 with the help of 190 incredible donors.

‘To the donors, you are absolutely incredible. Showing that there is indeed still kindness and empathy in this world. Nicela knows about your donations and always says “that’s so nice of them, please say thank you for me.” You are improving the quality of life for a little girl you have no relation to and that takes a special kind of person. We are endlessly grateful for your generosity’ the couple explains.

Support Nicela’s campaign here: https://backabuddy.co.za/campaign/nicela-naude-5573633905719708782

CLICK HERE to submit your press release to MyPR.co.za.

Author: Sanusha Shamdutt from BackaBuddy on behalf of Nicela Naudé.

Read More at the Source