Baby Novah: Family desperate to raise money for life-saving treatment

By: Natasha Archary

A Northern Cape family is desperately trying to raise money for a life-saving drug which could save their daughter, 10-month old Baby Novah.

Novah de Wett was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 and without treatment is only expected to live until 2-years old.

The rare genetic sickness destroys motor neurons, affecting movements and muscle development. This means Baby Novah has difficulty with swallowing, controlling her head movements and breathing.

Her condition will worsen over time, and most children with the disease don’t live past the age of 2-years due to breathing problems.

Novah’s family have started a BackaBuddy fund to raise money for a miracle drug which could help improve her condition.

Zolgensma, is currently the most expensive drug in the United States, with a cost of $2.1 million a dose.

That’s a staggering R35 million for a single dose of the gene-therapy treatment. The reason Zolgensma is so expensive is because the drug is said to “dramatically transform the lives of families affected by this devastating disease”.

Her father Clerment de Wett is praying for a miracle to save his beautiful baby girl.

Baby Novah was born on 3 June 2021, and at 4-months old the little girl stopped moving.

“As parents we were very concerned and took her to the nearest paediatrician. After running tests, our worst fears were confirmed and in January 2022, Novah was diagnosed with SMA Type 1. We are praying and hoping for a miracle to save my daughter’s life.”
Baby Novah’s father pleads for help to raise money for his daughter’s treatment