Local woman to shave head for baby's £1.9 million life-saving treatment

A local woman is shaving her head to raise much-needed funds towards the world’s most expensive treatment for a baby with a rare life-threatening condition.

Sylvia Craig, 58, is shaving her hair off on Sunday (27 June) to raise money towards the £1.9 million treatment for Zakariya Albaali, who has Spinal Muscular Atrophy (SMA) Type 1, which will give him a second chance at life.
 

Read more: Miracle baby with rare life-threatening illness needs world’s most expensive medicine with £1.9m price tag – but it will give him a second chance at lifePublished: 06 June 2021

SMA is a rare and often fatal genetic disease that causes paralysis, muscle weakness and progressive loss of movement. It affects the central nervous system and voluntary skeletal muscle movement, altering many basic motor functions, including walking, leg/hand movements, and losing the ability to swallow and breathe.​

Zakariya was born to Tara Richardson-Albaali, 31, originally of Milnrow, and Mostafa Albaali, 35, after years of trying for a child. After unsuccessful IVF rounds, they were told they would not conceive and decided to go travelling.

However, just two months into the couple’s travels, Tara discovered she was pregnant – naturally – and Zakariya was born in Dubai on 11 October 2020.

Unfortunately, the Albaalis’ joy soon disappeared, as their much-longed for son was diagnosed with the incurable disease at just seven months old.

Sylvia explained that because of health reasons, she was limited in how she could help raise money, before deciding to shave her hair.

She said: “It’s down to my shoulders now, and I’ve always had it around bob-length. I’m going about as short as a number two.

“Tara’s mum is my next door neighbour, so I’ve known her since she was a baby. I was so excited for her when she had Zaki knowing the struggles she and Mo had been through.

Sylvia will have her hair shaved off by a family member on Sunday afternoon in her back garden.

 

 

The latest data suggests that Zolgensma, a one-off gene therapy which costs £1.9 million, can provide rapid and sustained improvement in motor function for young children with type 1 SMA and prolongs their lives.

Zolgensma is given as a single intravenous infusion and contains a replica of the missing gene SMN1. It has helped babies to reach milestones such as breathing without a ventilator, sit up on their own and crawl and walk after a single infusion treatment.

The treatment’s active ingredient passes into the nerves and restores the gene, which then produces proteins essential for nerve function and controlling muscle movement.

It has only this year been approved for NHS treatment, with the first baby – five-month-old Arthur Morgan – receiving it for the same condition as Zakariya, who is now eight months old, just days before Rochdale Online’s first report on 6 June.

In first draft guidance NICE said Zolgensma should be made available for babies up to 12 months with type 1 SMA, although the age restriction is not present in the drug’s EU marketing authorisation. Because of the limited trial data for children aged seven to 12 months, NICE said their treatment should be discussed by a national multidisciplinary clinical team.

But no timeline has been given for this, and Zakariya and his parents cannot afford to wait to see if he is eligible, resulting in them setting up a fundraiser for the drug’s £1.9 million price tag.

Sylvia added: “Because I know Tara and her family and the circumstances, I felt compelled to do something to help.

“You always say there are people worse off that yourself but when it hits home, it’s more real.”

So far, £54,000 of the target has been raised.

NICE expects to publish its final guidance on Zolgensma in July 2021.

To donate towards Zakariya’s lifesaving treatment, please visit:

• www.helpzak.com

Follow Zaki's journey on Instagram @life_of_zakimans