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.
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,”
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.