Family of boy with rare condition 'give back'

The parents of a boy born with a rare condition say a hospital charity's intervention meant they did not have to spend months in a hotel while their son was critically ill.

Three-year-old Max, from Axminster in Devon, was transferred from hospital in Exeter to the intensive neonatal unit at St Michael's Hospital in Bristol, and spent more than four months between the unit and nearby Bristol Royal Hospital for Children.

Parents Anna-Marie and Ben initially had to stay at a Premier Inn in the city centre, but thanks to the children's hospital's Grand Appeal charity were then offered accommodation close to where he was being treated.

"It made such a difference," Anne-Marie said.

"When I got here (to Bristol) I'd just had Max - we'd been transferred from Exeter and I didn't know where we were going to stay," she said.

But the offer of accommodation just seconds from the hospital where he was undergoing intensive treatment changed everything.

"It just changed the way I felt instantly because I knew we had somewhere safe to base ourselves, somewhere we could leave our stuff, somewhere we could be close to Max," she added.

"There were times when the hospital called us and said 'it's urgent, you need to come back across to us' and we could just go across the road. You could almost switch off, even though you could never [fully] switch off it gave us the opportunity to just relax a little bit."

Max was born with VACTERL association, a rare condition which describes a group of symptoms including issues with vertebral and cardiac defects, as well as limb abnormalities.

Under the continuing care of the children's hospital he has had surgeries on his heart, bowels and airways, and in July 2025 he had his leg amputated.

Despite all this, he was at Bristol's Ashton Court on Sunday to take part in the Grand Appeal's Grand Walk event, which saw about 300 people invited to walk 5km (3.10miles) around the park to raise money for the charity.

"We just wanted to do what we could to give back to them and make sure other families have the stress-free experience [with accommodation] that we had," Anna-Marie said.

As well as giving back to the charity, Anna-Marie said the walk was an opportunity to meet up with other families they had met while staying at the charity's accommodation.

Helen Haskell, head of fundraising at the Grand Appeal, said it was "incredible" to have 300 people taking part in the event.

"Families like Max's have been through such a tough time and they've benefitted from staying in our family accommodation and all the incredible services available at Bristol Children's Hospital," she said.

"Today is a way of raising money for children like Max and giving back and it will make such a difference to future patients and their families from across the whole of the South West."

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