Rochdale couple run 200km in 10 days to raise money for lifesaving treatment for Zakariya Albaali

A Rochdale woman and her partner have each run 10km for 10 consecutive days to raise money towards a £1.9 million treatment for baby Zakariya Albaali, who has Spinal Muscular Atrophy (SMA) Type 1, which will give him a second chance at life.

Katie Helliwell, who works for the council's adult care service, and Mathew Sutcliffe completed their challenge on Wednesday 30 June, covering 200km between them and documenting the journey on Strava and Facebook.

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 SMA at just seven months old.

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.​

Despite working full time and managing childcare, Katie and Mathew have managed to complete their task, whilst raising funds towards the treatment.

Katie, who used to work with Tara, said: “It’s been tough. We’re both fitness fanatics so we’re always looking for a challenge and couldn’t think of a better cause.

“When I read Tara’s story, I felt I needed to do something as I know Tara from when we worked together years ago; she’s such a lovely girl.

“It’s been tough, especially come the end and I didn’t think we’d manage it, to be honest.”

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.

 

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

 

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.

So far, £56,000 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