TO be together on the beach as a family is something Anna Dunn could never take for granted.
It’s an experience that she and her husband Graeme and their three children Elliott, Aimee, and Bonham only get to do on anticipated family vacations to the sands of Beadnell in Northumberland.
Bonham, who recently turned five, was diagnosed as a baby with a rare and life-limiting genetic disorder that requires a full range of support from his family.
Anna and Graeme, from Paisley, knew instinctively that something was not right when Bonham was a baby and after a series of tests, the tot was diagnosed with pontocerebellar hypoplasia type 2A.
Anna, 40, said: “Everything went fine when I had Bonham, and then we were quick to realise things weren’t as they should be.
“He wasn’t feeding, that was the main issue. He just really wasn’t meeting any of these early milestones. Simple things like smiling, and he wasn’t able to hold himself up or anything.
“We knew, you just instinctively know when something is not right.”
Children with Bonham’s diagnosis have a short life expectancy, but his condition is so rare that research is hard to come by.
Anna said: “In my head sometimes I think he is maybe a bit like a kid with cerebral palsy, in that he can’t sit up or walk or talk or all these kinds of things.
“But in that sense, you know, he’s on a host of medications and whenever I ask the neurologist what the lifespan is, what are we thinking of, they can never tell you that.
“In any research you look at, he is so rare that his life expectancy is short, so there is no crystal ball.
“Nobody can tell you what the future holds, so I suppose we just try and make the most of everything in the now.”
Regardless of his condition, Bonham is a happy little chap that Anna affectionately dubs a ruffian because of his love for anything boisterous and loud that lights up.
The simple joy of family outings to the beach is only made possible by Northumberland charity Beach Access North East, which provides the free loan of specialised equipment for people with accessibility needs.
As Bonham gets bigger, it becomes more of a challenge for Anna to manoeuvre him around in his cumbersome pram which is fitted with a specialised seat.
The charity has allowed them to lease out a special all-terrain pram called the Hippocampe.
Anna said: “It just makes a beach holiday as it should be, where you get everybody on the beach, everybody can be together, and it enables Bonham to enjoy that and experience that.
“Just getting him down onto the sand, simple things. You can roll these things into the sea.
“They’re absolutely life-changing, they’re fabulous things.”
She added: “We only have access to this buggy when we’re on holiday. And I don’t know how many times we just stood on the beach crying because we just couldn’t believe we had our wee boy on the beach.
"It means the world, and people don’t realise that.”
Though Anna and her husband work, the cost-of-living crisis has made the dream of getting Bonham his own all-terrain pram untenable (they cost around £3000).
She said: “It’s not that I don’t want help, but I’ve always felt that me and my husband work, so we should be able to provide these things and do these things, but it’s come to a point where it’s impossible, we just can’t.
“We’ve got two older kids (Elliott is 13 and Aimee is 12) that have their wants and needs. Bills are huge just now, they are for everybody, so it’s just become something on my wish list.”
Anna works as an elderly care assessment nurse at the Queen Elizabeth University Hospital.
Back home in Paisley after her family getaway, she lamented to her colleagues about the struggles she was facing and how limiting it felt not to be able to take Bonham places like the park.
Karen Green, one of Anna’s co-workers, wasn’t having it: “Why shouldn’t Bonham be able to go to the beach? Why shouldn’t any child be able to go to the beach or the park? Just normal, everyday things.”
Karen and Anna’s other colleagues at the hospital decided to launch a fundraiser to get Bonham an all-terrain pram.
As a group, the colleagues are organising small fundraising activities like football cards and wellie walks, as well as a page on GoFundMe.
For more information, click here.
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