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£35,000 still needed to pay for two-year-old boy’s life-changing operation

News | Rhys Williams | Published: 10:21, Thursday February 14th, 2019.
Last updated: 12:04, Thursday February 14th, 2019

Awstin’s condition means he struggles walking and suffers spasms on a regular basis

The family of a two-year old boy born with a form of Cerebral Palsy still need £35,000 to pay for the operation that could change his life.

In August 2018, Awstin Raymond, from Pontllanfraith, was diagnosed with Spastic Diplegia, which affects the legs and causes symptoms like muscle stiffness and spasms.

Treatment for the condition costs £50,000 and is unavailable on the NHS in Wales.

That has prompted Awstin’s mother, Clare Williams, to launch a fundraising campaign, aiming to finance the procedure that she says would change Awstin’s life.

The treatment, Selective Dorsal Rhizotomy (SDR), cuts nerve fibres in the spinal cord, which can help improve vision, speech, and leg function.

SDR is usually reserved for children aged between two and four, who have the best chance of benefiting from the treatment.

If Awstin doesn’t have the treatment soon, it is likely that he will need painful operations in the future and spend his life in a wheelchair.

Ms Williams told Caerphilly Observer: “Without SDR, Awstin would have to have surgery to straighten his legs from too much pressure when he’s growing, which will cause them to grow curved and cause problems with his hips.

“SDR would change everything about the way he lives.”

Awstin could have to travel to St Louis in the United States to have the treatment, but Ms Williams has recently been given hope that it may be available in Bristol.

But the family will need to have raised between £35,000 and £40,000 before they can even book the treatment.

Awstin is set to start school in September 2020 and his mother hopes he can get the life-changing surgery before this.

Awstin with his mother, Clare Williams, during a fundraising walk up Pen-y-Fan

Currently, Awstin can only walk very short distances and gets frustrated with his poor balance.

At the time of publication, around £15,000 had been raised through donations and fundraising events.

• A fancy-dress disco has been organised for Friday, March 1, and a charity race night on Friday, March 8 will take place at Blackwood RFC to help raise funds.

A donation towards Awstin’s treatment can also be made online at www.gofundme.com/awstins-journey-for-sdr.

Facebook @awstinsjourney
Facebook @awstinsjourney

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