Cape Town - Two Capetonians have joined the De Wett family from the Northern Cape to raise over R30 million to save a sickly 1-year-old baby.
Novah de Wett suffers from Spinal Muscular Atrophy - a rare genetic disease affecting mobility, resulting in her relying on feeding tube to get nutrients. She was diagnosed in January and family has since been appealing for help on various platforms including online to raise the millions.
The founder of Walk a Ride Cancer Foundation, Michael Wynne, from Kraaifontein, was touched and decided walk more than 1 000km from his home to meet the De Wett family at their Aggeneys home on 10 June. He was raising an awareness about Novah’s needs and delivered a gift.
Wynne said: “It is heartbreaking to see someone unable to fully enjoy life due to certain health conditions and even worse when they cannot access treatment for different reasons. When I saw her story on TV, I knew I was going to be part of her journey and do the little I can. I believe if we could all work together we can raise that money, we just need to have faith. Family was so grateful on my arrival and you could see it’s little stuff that gives them hope, hence I am appealing to anyone to donate to the family.”
Another good Samaritan in the race is Dr Sally Ackermann from Constantiaberg Mediclinic who has been trying to help the family since the day of diagnosis in January this year.
She said Novah had the most severe form of the disease and as a result she has never achieved the ability to roll, lift her head or sit. She already has profound weakness of her limbs and neck, and progressively worsening weakness of her swallowing and breathing muscles.
“The earlier a child can receive gene therapy, the better the improvements seen but once symptoms start, the treatment is not curative. Death without treatment occurs between ages one to two years, usually from respiratory failure. Unfortunately current treatments are prohibitively expensive and it is a lengthy process to arrange authorisation to import these treatments and to arrange for them to be administered locally. This is all in place, we are just unable to proceed because of the lack of funding. Even a small donation could make a huge difference to the family’s fund raising efforts and most importantly, to Novah’s outcome.
“The urgency of treatment cannot be over-emphasised; the sooner it is given, the better the potential improvements seen,” said Dr Ackermann.
Novah’s father, Clerment de Wett, 37, said they were grateful for the support they had been receiving since they started appealing for help and said Wynne and Dr Ackermann kept his family of four strong and hopeful.
“It’s difficult to tell her older sister what’s going on. I can’t bare the thought of telling her that Novah could die if daddy fails. Our journey really has been difficult and I asked many questions like am I being punished or did I inherit the sins of my forefathers,” said De Wett.
Donations can be made via https://www.backabuddy.co.za/baby-novah or call Clement de Wett at 082 332 3918 or more information.
Weekend Argus