Adorable tot with cerebral palsy is finally on his feet after copying twin sis walking
THRILLED Paul Junior Exon beams with delight and pride as he takes to his feet and walks for the first time with the help of his twin sister Gracie.
The three-year-old was born with cerebral palsy and spastic diplegia, meaning his leg muscles and feet were so stiff and tight that he couldn’t walk.
For years he struggled to hit the same milestones as his sister, leaving him frustrated and in pain. But after pioneering surgery in America – and with Gracie’s help – he has given his parents Paul, 45, and Rosie, 43, the Christmas present they have been praying for.
Rosie, a full-time mum from Shepshed, Leics, said: “Without Gracie, I don’t think Junior would be anywhere near as advanced as he is now.
“Junior doesn’t let anything hold him back – he’s very clever, and quickly learned that if he falls it will hurt.
“But by copying Gracie, he quickly became a lot more mobile.
“Gracie’s the naughty leader – when Junior realised he could move about by himself, he started doing more and more of what his sister was doing.
“I can’t describe my happiness at seeing my little boy taking his own steps, walking by himself.
“It is a day I thought I may never see. This is going to be the happiest Christmas our family have ever had.
“I am so proud of Junior – and Gracie. She motivates him – she’ll set up climbing frames all over the living room, and Junior loves to copy her climbing.
“Anything that will give me a heart attack, the pair of them will give it a go!”
The twins were born prematurely at just 30 weeks. Junior weighed 3lb 9 and Gracie just 3lb. They spent the first few weeks of their lives in intensive care.
Rosie, who is also mum to Mia, seven, said: “After taking them home, and as time passed we noticed that while Gracie could push herself up to sit, Junior was unable to sit up independently.
“When he was a year old an MRI scan revealed he had cerebral palsy. I was totally dumb struck at the thought that all the dreams I’d had for my boy were shattered.
“The big label of cerebral palsy made me see the glass half empty – you can’t mend it. I had to hold back the tears.
“Specialist doctors told me the best thing he had going for him was his smile, that he will be disabled for life.”
Because both his leg muscles and feet were stiff and tight Junior struggled to sit or stand. He needed a ‘walker’ to take steps together with orthopaedic boots and regular physiotherapy.
Rosie said: “But the lovely thing with him and Gracie was that she never saw her brother’s limitations.
“She gave him the best start in life, a boost. They work as a team.
“If he cries she sorts him out. They have such a special bond.
“Seeing them together gave me the strength to realise that if anyone could defy what doctors thought, it would be Junior.”
And the couple then heard about pioneering surgery in America called Selective Dorsal Rhizotomy (SDR) where damaged sensory fibre nerves that cause muscle stiffness and spasticity are cut.
Paul, who runs his own business building motor racing engines, worked all the hours he could to raise money and they set up fundraising pages to raise the £60,000 needed for the life-changing surgery at St Louis Children’s Hospital in Missouri last December.
Paul said: “We knew there was no cure for cerebral palsy, but this was life-changing surgery, a special technique that involved cutting some of the damaged sensory nerve fibres that come from the muscles and enter the spinal cord.”
After the operation Junior was ill and needed intensive physiotherapy before he could come home. And progress was slow.
Rosie admits: “I started to worry it wouldn’t happen.”
But the doctor who did the operation predicted Junior would walk independently within a year. And now, just days before Christmas, he can finally walk eleven steps unaided – and he’s getting stronger every day.
His mum said: “It has been a long, frustrating journey.
“When he took his first steps it was amazing. It was strange to see him taking them without falling – it was an unbelievable feeling, and while the
steps weren’t perfect he did it and he was so excited.
“Once we got over that first hurdle he’s just been building it up and up.
“Gracie does his physio sessions with him. I think the big turnaround was when the physios realised that if they wanted more out of Junior, they would need to get Gracie onside to motivate him – it’s really all down to her.
“She’s a big motivator for him – she never stops, and he wants to keep up with her. If he falls over, Gracie will shout at him to get up again.
“She’s been a massive encouragement. Games are incorporated to make the sessions more fun, and in every single one Gracie joins in.
“I don’t think he’d have been able to get this far without Gracie.”
Now the twins are due to start school next year.
She said: “Other than the problem with his legs, Junior is perfect – he’s very bright, and his speech is fantastic.
“He will love school. Gracie will protect Junior, and he relies on her – but they’re both very strong-minded. She is fiery and he’s cool as a cucumber – they complement each other perfectly.
“Obviously we don’t know what the future holds, but since the operation the glass isn’t half empty anymore.
“Now I can see a light at the end of the tunnel – it’s been easy to overlook change and improvement over the past year because I’m watching them all the time, but Junior is making improvements every day, even if it’s just his confidence growing.
“At the twins’ age, neither of them understand Junior’s limitations – they take on any challenge, and thanks to Gracie the sky’s the limit for Junior.”