'I'm still crying': 9-month-old S'porean baby with rare genetic disease hits S$2.4 million fundraising goal

The fundraising campaign for nine-month-old Baby Faziq has reached its goal of S$2.4 million.

The family reached the milestone late on Mar. 26, thanks to over 43,000 donors.

This means that he will be getting his Zolgensma dose soon.

"Until I wake up, I'm still crying," said his mother, Norhaziqah, in an emotional phone call with Mothership on Mar. 27.

"It's still unbelievable... We are overwhelmed lah."

She also thanked the donors, fundraising platform Ray of Hope, and the stranger who started Baby Faziq's Instagram page, @hopeforfaziq, to raise awareness of his story.

"Thank you so much. We wouldn't have made it without them," she said.

Two babies with a chance

Baby Faziq's milestone comes shortly after another baby, Baby Ginny, successfully raised S$2.4 million for her Zolgensma dose on Mar. 21.

Both babies suffer from Spinal Muscular Atrophy (SMA), a rare genetic disease that progressively destroys motor neurons and weakens muscles.

With an occurrence of around one in 10,000 to 12,000 births, this translates to two to three new cases in Singapore each year.

Norhaziqah said that the family has visited the hospital to arrange the Zolgensma treatment.

The hospital has already called the U.S. pharmacy to order the S$2.4 million drug, she said.

The drug will take around eight to ten days to arrive.

In the meantime, Baby Faziq has begun pre-testing and will be seeing a cardiologist next week to prepare for his gene therapy.

Sharing in the happy moments

The family hasn't made any real plans to celebrate yet.

But they will be bringing Baby Faziq to visit his brother's grave tomorrow.

Baby Faris was born in 2016 and also suffered from SMA.

When he was born, there were no approved treatments for SMA in Singapore.

Faris passed away before he turned six. Faziq, who was born three years later, has never met him.

Tomorrow will mark the first time Faziq has visited his brother.

"Just to share the happy moments, lah," she said. As a family.

Related stories

Top image from Mothership and Faziq's family