Six-year-old Milnrow girl to tackle Wales' highest mountain to raise money for baby's £1.9 million life-saving treatment

A little girl from Milnrow is taking on Snowdon next month to raise much-needed funds towards the world’s most expensive treatment for a baby with a rare life-threatening condition.

Robyn Treece, six, is climbing Wales’ highest mountain on Saturday 10 July to raise money towards the £1.9 million treatment for Zakariya Albaali, which will give him a second chance at life.

Robyn said she wanted to climb Snowdon "to raise lots of money to help a special little boy called Zaki get some special medicine that he needs to live."

Her mum, Sarah Orme, a close friend of Zakariya's mum Tara Richardson-Albaali, said this would be the first time Robyn had undertaken such a feat, adding: "We are so very proud of her."
 

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

Zakariya was born to his parents Tara, 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 an incurable disease at just seven months old.

On 18 May 2021, Zakariya was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the condition which leaves babies with a life expectancy of just two years without medication.

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.

 

 

SMA can be treated with Zolgensma, a one-off gene therapy, 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 (National Institute for Health and Care Excellence) 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.

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

• www.helpzak.com

Follow Zaki's journey on Instagram @life_of_zakimans