Swindon family seeking funds for son's lifechanging operation

Hayden Hyde from Badbury Park was born at 29 weeks and was diagnosed with quadriplegic cerebral palsy and learning difficulties five weeks later, then began suffering severe back pain during the pandemic.

His family was devastated to learn of the years-long wait for him to have the life-changing spinal surgery on the NHS, and are seeking support to cover the costs of a private provider.

While struggling with the isolation of lockdown, the 16-year-old experienced increasingly painful spasms that led to a breakdown in late 2021.

Pain management and a proper diagnosis by a neuromuscular clinician followed in 2022. His spine had curved to 27 degrees and was not expected to get any worse.

Unfortunately, it did become more severe. A medical review due 18 months after the first X-ray was brought forward urgently and found that the scoliosis had progressed rapidly to 53 degrees. It then progressed further to 70 degrees.

He had emergency specialist seating made to help accommodate his changing body shape, and his school underwent training to help him stop choking because eating and drinking are now more difficult for him, as is controlling his powerchair independently.

Last month, Hayden’s family learned from a specialist that spinal surgery is the only available option that would allow the young man to avoid becoming bedbound for the rest of his life – but the NHS waiting list for this operation is currently around two years.

So, they are urgently trying to raise enough money to cover the costs of having the procedure carried out by a private healthcare provider in the next few months – but this will cost at least £50,000.

Hayden Hyde (Image: Danny Hyde)

Mum Kirsty said: “Living with a child with a disability isn’t easy and you’re hit with so many challenges, but life is also super precious and you have so many magical moments that make the hard time all worth it.

“Hayden is a really happy boy, he likes chatting with people on social media, he has a sarcastic sense of humour, he’s very selfless and cares for others – he always offers his birthday money to his brother.

“He was in so much pain during lockdown but anyone who knows him personally knows he hates to make a fuss and never admits to being in bad way, but we knew he was struggling, it was heartbreaking."

Dad Danny said: “We’re quite private and hate to ask other people for money, but we are absolutely desperate and there’s nowhere else to turn. Learning about the NHS wait time was soul-destroying.

“Ideally, Hayden would have the surgery by November."

Danny’s footballing friends have helped rally support and are going on a 21-mile charity walk on September 8 to raise more funds.

They are seeking backing from people, groups, and businesses to help the Hydes reach the fundraising target.

Dave Slattery said: “We played football with Danny for years and want to make a dent in this money by organising events, fun days, anything we can.”

A fun day is being held at Hayden's school on August 13 as part of the planned events to boost the fundraising total.

Kirsty added: “Hayden has been so grown up and accepted the news of needing an operation soon but, mentally, it’s had a very big impact on him. It is very daunting, and he’s always uncomfortable, his life is hard enough as it is.

“As a family we are forever grateful to each and every person that can help in any way.”

To donate, visit the Helping Hayden Hyde Facebook group or the fundraising page bit.ly/3CVwJ2z