A doting dad is desperately calling on the much-needed assistance of the community to afford his youngest daughter battling a fatal genetic neuromuscular disorder lifesaving treatment.
Clerment de Wet, a Macassar native residing in Aggeneys in the Northern Cape, has resorted to crowdfunding efforts in hopes of raising enough money for his 11-month-old baby girl Novah, who was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, to receive the gene therapy Zolgensma. The sentence on Novah’s life urged De Wet and his wife, Charene, to champion a Back-a-Buddy campaign in an attempt to raise the funds needed to cover the costs of the treatment, for which they require tens of millions of rands but have collected just a drop in the ocean.
“We need assistance with monetary donations, and prayers, to help us get through this,” De Wet said. “If everyone could make a small, valued contribution this will enable us to help Novah get the medicine she urgently needs.”
The desperate, impassioned parent has dedicated himself to sharing Novah’s story far and wide, to rally communities and good Samaritans who may be able to help give their baby a fighting chance at life.
De Wet recalled their perfect world being shaken when their “Supernovah” was diagnosed with SMA Type 1 in January earlier this year.
“We didn’t know what to expect. We suddenly felt alone and hopeless, especially at the devastating news that she has a life expectancy of one to two years with the disease,” he recalled.
SMA type 1, also known as Werdnig-Hoffman disease, affects important neurons that controls muscle movement and symptoms displayed in infants may appear as early as birth or within the first six months of life. Online articles state that babies, like Novah, suffering from the disorder experience difficulty with breathing and feeding; they may not meet certain developmental milestones; and die before their second birthday.
“We are in a race against time to get her the gene therapy,” said De Wet. “But we know with the Lord at our side; this is not an impossible task and I am a firm believer that with prayers our situation will be changed for the good and the work of the Lord will be there for all to see.”
While De Wet and his spouse are truly living any parent’s nightmare and wouldn’t wish their situation upon any other person he reckons Novah and her generally happy demeanour makes the painfully difficult circumstances a little more bearable. Furthermore her older sister, although she cannot fully grasp what’s happening, enjoys sharing every day granted with her. The family tries not to focus on the fact that she is sick. They rather use the unwavering support from relatives as fuel to continue “fighting to get our Supernovah the life every child deserves”.
De Wet said the funds collected through the online crowdfunding platform will be directly paid to the pharmaceutical company responsible for the treatment required to save Novah’s life. The once-off Zolgensma therapy, which was approved in 2019, is said to replace the faulty gene responsible for making the protein required for the neurons survival. Any big donation would be handed an 18A tax deductible certificate issued by the Angel Network. “Our medical aid, charity organisations and certain individuals have failed us,” De Wet says. “We are asking the public to help us save our Supernovah and raise the funds in time to help her. The only way we would get help is if everyone joined hands and opened their hearts for our cause.”
For donations visit www.backabuddy.co.za/baby-novah. For more information contact De Wet via email at clermentdewet@gmail.com.
