Sickly baby Novah to get much needed medicine
|Published
Year-old Novah de Wett could be spared more life as she’s expected to receive the needed medicine. Supplied
Cape Town – A few months ago the De Wett family was in a race to raise about R30 million to save a sickly one-year-old baby suffering from Spinal Muscular Atrophy.
Earlier this month, the family received the good news that Novah de Wett was selected for the Novartis lottery – providing funding for medicine to help provide rare medicines to foreign countries.
She was diagnosed with this rare disease in January and the family has since been appealing for help on various platforms to raise the millions.
Their hope is to get her a cure for the genetic disease which affects mobility and development, resulting in her relying on a feeding tube to get nutrients.
Novah’s father, Clerment, said the opportunity was made possible through the help of Dr Sally Ackermann from Constantiaberg Medi-Clinic, who then broke the news.
“Novah was made part of a lottery system, a pharmaceutical company that helps children that need medicine not approved by their country.
“Novah’s name was drawn against all odds.
“She will get the treatment free of charge.
“Our prayers were answered.
“We still a long way to go and still need prayers but the Lord kept his promise.
He said there are formalities that still need to be finalised once the baby is out of danger.
She’s stable but currently in ICU at a local hospital.
“We were just so excited and overwhelmed with the news.
“At the same time when we got the news Novah was a bit unwell and we came to Christiaan Barnard Netcare and she is still in ICU recovering.
“So the medicine will be administered at Red Cross War Memorial Children’s Hospital once she is better,” said Clement.
Ackermann 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, sit and experience a progressive worsening weakness of 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.”
The family ran online campaigns raising funds to save Novah and Catherine Du Plooy, chief growth officer at BackaBuddy said they’re happy for Novah’s story turned out so well.
“The outpouring of compassion and love Baby Novah has received through her BackaBuddy campaign, and learning that she will receive her miracle has warmed our hearts and left us overjoyed,” Du Plooy said.