One family’s cerebral palsy journey – and the miracle operation SDR that's given them hope

Yahoo Lifestyle

The sound of an excited voice greets me as I arrive at the home three-year-old Xavier shares with his mum and dad. I can hear him chattering away in the other room as I step past his walker and sit down for a cup of tea with his mum Sharanjit.

Just like any other family home, pictures of the youngster are framed on the surfaces, toddler artwork is on display and toys are tucked away. But for Sharanjit and Gavin, their first three years of parents have been quite unlike most young families. 

Because, at just a few months old, it became clear to his parents that Xavier wasn’t developing in the same way as his peers and at 18 months he was diagnosed with cerebral palsy.

Since then, Sharanjit and Gavin have been working tirelessly to give him the extra care he needs round the clock. And after learning of a groundbreaking new operation that could help their son walk, they’ve added fundraising and preparing their son for his first aeroplane ride and a trip to the US, where the procedure can be performed.

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“It’s like the normal experience, stresses, worries and tiredness of parenting amplified,” smiles Gavin. “It’s pretty exhausting but like any parent we want to do the best for Xavier.”

Xavier’s birth was a difficult one and the oxygen to his brain as cut off for a period of time, resulting in cerebral palsy in his right arm and both legs.

As he grows, his muscles won’t grow properly with him. In most cases this means children need a wheelchair and numerous operations to reduce the stiffness and pain in the affected limbs.

Life with Xavier

You’d never know what Xavier has already been though, or what lies ahead. As dad Gavin carries him in to join us in the kitchen he gives me a big grin and explains with wide eyes how he’ll have to smash up the newly built LEGO helicopter he’s clutching in his left hand so he can make an aeroplane out of the pieces.

Interrupted only chomping on his digestive biscuit he’s more confident than most toddlers I meet , happy to chat to me and share his snack.

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Looking after a child with a disability is an all-encompassing job and both Sharanjit and Gavin have had to rethink their entire lives.  Sharanjit has given up her job as a teacher to take care of their son and Gavin, who is a self-employed podiatrist, shuffles his schedule to enable him to help with physio trips and doctors’ appointments.

“For me to work full time teaching would just be completely impossible with all of his physio sessions.” Sharanjit explains. “Every Friday Gavin takes him to hydrotherapy, which gives me a few hours to myself.”

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And those hours are precious. Xavier’s cerebral palsy affects his right arm and both legs, meaning he needs help with all basic tasks and can only walk with the help of his walker.

“We have to dress him, take him to the toilet,” Gavin tells me. “We even have to hold him while he turns the tap on to brush his teeth.”

Right on cue, Xavier pipes up, asking to be taken to the toilet.

Sharanjit laughs, “He’s very well toilet trained, which is a relief! But it’s hard with things like teeth brushing because he knows what to do and without his disabilities, he’d be much further on developmentally in so many ways. But instead, he’s struggling with spitting out toothpaste.”

She adds: “But we don’t know any different than the life we’ve had with Xavier. I don’t have another child to compare. And it’s the same for him, this is just the way his life is.”

Gavin untangles Xavier from his LEGO constructions and picks him up, showing me how they’ve been professionally taught to lift their son.

“The older he’s got, the heavier, so now we have to see an osteopath regularly, our backs are suffering very badly from that, we’ve had to be trained how to lift him.”

Extra care Xavier needs includes massage every day to stretch out his legs. If his parents don’t do this he’s likely to wake in the middle of the night in pain and have sore legs the next day.

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“It’s like if we did a 13 hour workout – our legs would be sore the next day,” explains Sharanjit.
While Gavin’s taking care of business, Sharanjit explains to me how every moment she thinks about how to help her son.

“When you’re playing you’re always thinking ‘how can I do this to incorporate natural physiotherapy so he doesn’t even notice?’, ‘how can we set up toys so he plays but doesn’t realise he’s doing physio at the same time?’”

Gavin, who’s returned to help Xavier decide which episode of Tom and Jerry to watch adds, “Parenthood’s a struggle. You always feel you’re on the edge anyway and we feel that we’re even close to that edge for even longer.”

The operation

“If it weren’t for finding out about the operation I don’t know what we’d have done,” says Sharanjit, before adding: “Well of course we’d have coped, you always cope somehow!”

The surgery, Selective Dorsal Rhizotomy  or SDR, is not new, but this particular technique has been pioneered in St Louis, America and tested over 20 years. It is only offered in only one hospital on the UK and is a long way from being funded by the NHS, with many families being refused funding from their primary care trusts and being asked to privately pay. Xavier will travel to the USA for the procedure this summer.

“It really has been a lifeline and speaking to people online who are in similar situations to us and Xavier, or are further ahead and have had the operation has really helped up deal with it emotionally and just get day-to-day advice that would have been so hard a few years ago.”

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Fundraising for Xavier’s operation, which is cutting edge and available in very few places, has also brought many people in their South London community together. They’ve had a disco, at which Xavier danced all evening, a Zumbathon and local businesses have offered their services to help raise money.

“The best thing we did was start talking about Xavier and our experience,” Gavin says. “It helped us deal with it and we think it’s so important to make people and especially children with disabilities more visible and more understood. It’s definitely getting better and we get so much support and so many nice things said to us when we’re out as a family, it’s really quite touching.”

The money raised will pay for Xavier’s operation and the private recover physiotherapy he’ll need, which should enable him to walk when he heads to school with his peers this autumn.

“The best thing is that anything extra we raise on top of what we need for Xavier, we can pass on to another child waiting for the operation. And the more awareness we raise the more children will benefit in the future when this operation is more widely available in the UK.”

We’re wishing him the best of luck, success and a speedy recovery.