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Glasgow Live
Glasgow Live
National
Keiran Fleming

Paisley mum's 'world collapsed' moment she was told baby son had rare life-limiting genetic disorder

A mum from Paisley has spoken of the moment she found out her son had a rare condition which left him unable to function independently.

Anna Dunn, 40, had her world turned upside down when she was told by doctors that then four-month-old Bonham had Pontocerebellar Hypoplasia type 2A which is a life-limiting genetic disorder which affects the development of the brain.

Signs and symptoms vary but for Bonham the condition impacts his balance, movement and ability to function.

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The mum-of-three and dad, Graeme, try to be on hand to help their son, now aged 5, with tasks that many of us take for granted.

Anna told Glasgow Live: "When Bonham came along I had a normal pregnancy and normal labour. It felt like life was complete.

"But my world collapsed and I just broke because I was back in the worst case scenario. I had to fight to get him home and we didn't sleep for months.

"He had an MRI scan which showed that his cerebellum was small. As we get older our brains grow but that part of Bonham's brain won't, it'll just be the way it is.

Anna's life was turned upside down when she found out (supplied)

"The cerebellum controls your balance, movement and your ability to function. I'd set my alarm to go off every few hours to try feed him. I'd try but he wouldn't take anything and he couldn't put weight on.

"They expected Bonham to be eating through a feeding tube but he is a wee star and so far he is still eating.

"That is probably one of things he really enjoys because he can eat during meal times, that is something we all just take for granted.

"He can't talk but as a family we know what he wants. He is a happy boy and full of fun.

"There is also a life-limiting aspect to it. When we first got the diagnosis I researched frantically but it is really rare. We don't know how long we have with him, we've been told it's a regressive disease.

"His biggest symptom is the muscle spasms, so things like getting him into a car seat or a pram can be very difficult."

The loving mum's other two children, Elliott, 13, and Aimee, 12, hope to experience as much as they can with their younger brother.

Despite Bonham's condition, Anna is ensuring that her son can live as normal a life as possible and visit places and attractions other five-year-old's love going to.

She explained: "We can sit back and be upset about it but if we don't do it for Bonham no one will.

"There is nothing more amazing than seeing the determination in that wee boy who just wants to engage with people.

"As a mum I want him to experience as much as possible. Why shouldn't my child go to Blair Drummond or the beach?"

Although he may not be able to communicate verbally, Bonham is a boisterous lad who looks forward to interacting with others.

The five-year-old is always putting smiles on faces. The 40-year-old said: "He is not made of China.

"At nursery Bonham likes the rough and tumble. The noisier and brighter the better.

"He loves rock music especially with drums. He goes to Riverbrae Primary school which is the most phenomenal place.

"There is a wee boy in there with a huge personality and at times you may think he is locked in but when he does express himself he is a ray of light."

The family hope to purchase an all-terrain pram (supplied)

The family are now looking to purchase an all-terrain pram which will give both Bonham and his siblings more freedom.

Anna, who works as an elderly care assessment nurse at the Queen Elizabeth University Hospital, is being supported by her colleagues, who set up a GoFundMe to help raise funds to purchase the vital piece of equipment which could change the youngster's life.

The mum-of-three explained: "You just can't push these big, heavy prams through muddy patches.

"However, the all-terrain pram can push through everything. As a family it means we can have more experiences together.

"A simple thing as having a picnic at the beach always means that I had to sit at the top with Bonham while my other kids ran down to the water because I can't physically get Bonham onto the beach.

"The pram would open up our world. We used them on holiday at Beadnell in Northumberland and they are just incredible.

"When we hire them I stand in the middle of the beach and start to cry because I am there with my son"

To donate to the GoFundMe click here

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