Baby Novah in lottery for life, family try to raise R17.8m for ‘miracle drug’

The life of seven-month-old baby Novah De Wet balances on the edge of fate as she could win a literal lifesaving lottery to be one of only 100 people on the planet to receive a new miracle gene therapy drug.

TRAPPED IN A BODY ONLY MILLIONS COULD SAVE

Baby Novah is from Aggeneys in the Northern Cape and was diagnosed with type 1 spinal muscular atrophy, a fatal, rare genetic disorder that affects important motor neurons in the body, responsible for movement and muscle development.

Spinal muscular atrophy is the most common inherited fatal disease in infants but it can be treated with Zolgensma, a miracle gene therapy drug only available in the US. The issue is that the drug costs R35 million.

BABY NOVAH FIGHTING FOR LIFE

The Global Managed Access programme offered by Novartis, the manufacturer of Zolgensma, is a chance to receive the drug for free.

The access program was created to provide free access to the once-off treatment to only 100 patients worldwide per year in countries where the drug is not available, including South Africa.

However, it is no guarantee that she will be selected as one of the patients because the program works on a lottery system and her family is not just sitting around waiting for a lottery to decide baby Novah’s fate.

RACE TO RAISE FUNDS

The De Wet family joined forces with the Angel Network to launch a crowdfunding campaign on BackaBuddy, appealing to the public, and corporations for financial support to give baby Novah another chance at life.

Clement, baby Novah’s father, says she was given a life expectancy of only two years.

“Hearing that our beautiful child has a short life expectancy is a sentence we just can’t accept. As we stared into the eyes of baby Novah, sleeping in my arms, we promised her we would fight for a happy ending. We need to raise the funds as soon as possible before irreversible damage is done. My dream is just to see my daughter do things normal babies do and this treatment will enable her to, it won’t just save my baby but it will save my whole family,”

said Clement.

Baby Novah has received continuous unconditional love from her mother Charene and big sister Hayleigh.

Novartis has approved a three-year payment plan for the drug if the De Wet family can cover an R17.8 million deposit. Thus far just over R18 000 has been raised. If Baby Novah is selected in the lottery, funds raised will be returned to the donors or used to fund another patient with the same condition.

ALSO READ: NEWS IN A MINUTE: ‘Cyril Ramaphosa wants to be WHITE’