7-month-old, Baby Novah De Wet, from Aggeneys, Northern Cape, was diagnosed with Spinal Muscular Atrophy (SMA) type 1, a fatal, rare genetic disorder that affects important motor neurons in the body, responsible for movement and muscle development.
The condition which is the cause of the most infant fatalities can be treated with a miracle gene therapy drug, Zolgensma, available only in the US, which costs an astronomical R35 Million rand ($2.3 Million).
For a chance to receive the drug for at no cost, Baby Novah has entered the Global Managed Access programme offered by the drug manufacturer, Novartis, which has been established to offer free access to the once-off treatment to 100 patients worldwide per year in countries in which the drug is not yet approved, including South Africa.
With no guarantee that Novah will be selected as the one of the patients, as the program works with a ‘lottery’ system, the De Wet family have partnered with The Angel Network to launch a crowdfunding campaign on BackaBuddy, appealing to the public, and corporations for financial support during this difficult time.
“Hearing that our beautiful child has a life expectancy of just 2-years, is a sentence we just can’t accept, as we stare in our little girl’s eyes. Sleeping in my arms, we promised her we would fight for a happy ending, and that is exactly what we plan to do. While we have a steep mountain to climb, our mission is not impossible, and that is what we need to believe, to save our little supernova” – says Clement.
Novartis has approved a three year payment plan for the drug, if the family can cover the cost of the R17.8 Million ($1.2 Million) deposit, which the campaign hopes to fund.
Since the launch of the campaign, generous donors have already made contributions to the value of R14 000. Funds raised will be paid directly to the relevant institution. Donors will be eligible for Section 18a tax certificates, issued by The Angel Network.
As baby Novah’s condition is extremely progressive, time is of the essence, says her dad, Clement.
“As a family, our dream is that our little girl can live a long, happy and healthy life. We know that with this drug, a bright future awaits our little one. We ask that you hear our hearts, share our story, and donate if you can. You will be saving baby Novah’s life, and heal our family” says Clement.
If Baby Novah is selected in the lottery, funds raised by the campaign will be returned to the donors or used to fund another patient with the same condition.