'Remarkable' two-year-old with cerebral palsy needs help to live a full life - The Rugby Observer

'Remarkable' two-year-old with cerebral palsy needs help to live a full life

Rugby Editorial 11th Mar, 2020 Updated: 11th Mar, 2020   0

A DETERMINED two-year-old boy with cerebral palsy needs help to get treatment which will let him live a full and independent life.

Ronnie Shore’s condition means he cannot roll, sit, crawl or walk. His ability to speak is affected and he has swallowing difficulties – so is fully reliant on parents Rebecca and Joe.

He needs specialist therapy to help train his body to do what comes naturally to most toddlers – but time is of the essence, as the ‘fight for Ronnie’s brain’ will become less effective the older he gets.

Ronnie was born prematurely at 28 weeks, and soon after was diagnosed with a type of brain damage which would evolve into cerebral palsy – the day his mum and dad’s ‘world came crashing down’.

“It was a blur the day we found out about Ronnie’s diagnosis,” Joe told The Observer. “We wouldn’t know the seriousness until he was older. All we were told was that Ronnie might have difficulty walking or he would be fully wheelchair bound. There was no way of knowing.”

He said the anxious wait to find out the extent of the damage to Ronnie’s brain left them distraught for months.

“I remember random waves of emotion taking over while driving to and from hospital to visit Ronnie. We would just cry, grieving for the future we had imagined.”

Not long after his first birthday, Ronnie was diagnosed with a cortical visual impairment.

“We still don’t know how much he can see,” said Joe, “we only know his sight can improve up to the age of seven. We effectively have to teach him to use his eyes.

“It’s astonishing to think that something that comes so naturally to most, Ronnie has to learn – all while trying to master difficult motor skills like crawling and sitting.”

Despite the challenges they faced, Rebecca and Joe decided to stay positive.

“Moping around thinking about what we might miss out on was never going to help Ronnie,” Joe said. “Seeing him develop in recent months is awe-inspiring for us and we couldn’t be prouder.”

And Ronnie has led the way with his bright personality.

“He is an absolute sweetheart! Despite his challenges, he is a happy little boy. He has a cheeky side and loves cuddles and tickles.

“Ronnie brightens up everyone’s day with his cheeky grin. People see how hard he tries and are influenced by how brave he is.

“Ronnie brightens up everyone’s day with his cheeky grin.”

“He has been determined since day one, and works so hard during his physio and therapy despite how exhausting it is for him.”

With help from charity Just4Children, Rebecca and Joe have launched an appeal to raise £20,000 for intensive therapy which is not available on the NHS.

“It’s a fight for Ronnie’s brain,” Joe said. “Our remarkable boy is improving and he has so much potential – its just a case of unlocking it.

“As he gets bigger, his body’s potential will give up on him – that’s why it is so important for us to strike now and get Ronnie the treatment he needs and deserves to live a full life, one of happiness and independence.

“Our son is the most amazing little soul! The sky is the limit for our fighter, and helping Remarkable Ronnie to reach his potential would be the most immense gift we could ever give him.”

Visit www.justgiving.com/campaign/RemarkableRonnie to donate.


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