All seven-year-old Sean Lynch wants to do is be able to run around with his friends and jump into a puddle wearing a pair of Wellington boots just like his favourite character Peppa Pig.
But because of serious complications as a result of his premature birth, Sean has been confined to a wheelchair for most of his almost eight years.
His parents Liam and Virgine, have continuously pushed to get Sean the best help available, and now a new trial in the US could see their lives change forever.
“Things didn’t go as we wished on the day he was born,” dad Liam tells Be.
“He was born premature, but he had to be resuscitated for 20 minutes, and we knew at that point that if your brain is starved of oxygen for so long there are potential ramifications.”
While Sean survived, the prognosis at the time by doctors was grim.
“We were told we shouldn’t expect too much, he probably wouldn’t speak, might have visual problems, hearing problems, fine motor skill problems,” Liam tells us.
“We were told he could be on his back for the rest of his days.”
But his parents then set out on a mission to make sure they could give Sean the best life possible, and so he started intensive physiotherapy, speech and occupational therapy and anything else they could try.
A year after he was born, Sean was diagnosed with Cerebral Palsy, with his legs being the most impacted. But by the time he was 18 months, with the help of his therapies and pure determination, he started meeting his milestones.
“It was probably then that we saw there were no cognitive issues,” Liam says, remembering the relief the Brisbane family felt.
“That was very important. In terms of our wishes for him to have the most independent life as possible, the fact there was no cognitive impairment, spurred us on to work on the physical.”
It was one of Sean’s physios that told his parents about the new trial surgery in the US, and that she believed Sean, who also has epilepsy as a result of his condition, was an ideal candidate.
“I was sceptical but then my wife showed me videos of kids that have gone and had it done and it was mind-blowing to see the difference,” Liam recalls.
“Kids, like Sean, that were badly impacted, but then afterwards they are running around, climbing trees.”
Because of the spasticity in Sean’s legs, they are beginning to mechanically deform and the only option in Australia currently is extensive invasive surgery, which could have a serious impact long term. And even if it was successful, he would require it again once he finishes growing.
In contrast, a US surgeon developed a pioneering treatment called SPML (Selective Percutaneous Myofascia Lengthening) that has worked wonders on others like Sean.
SPML is a non-traditional, orthopaedic tendon/muscle lengthening/release that is minimally invasive, with minimal scarring, mostly for children and adults with Spastic Diplegia Cerebral Palsy. Dr Roy Nuzzo adapted the key-hole procedure initially used for cardiac patients.
“You cannot afford not to try these things,” Liam says. “And I got a great sense of confidence when his orthopaedic surgeon said if he was in our situation he would do the same.”
So, in September last year, Sean and his mum flew over to New Jersey to meet Dr Nuzzo and Sean was accepted as a patient for the trial.
The family now hope to return to the states in December. It is expected Sean will be in hospital for a few days after the much less invasive surgery, followed by three weeks in a cast from the waist down, before he can travel back to Australia and return to physio.
Getting to do the treatment would not have been possible if it wasn’t for the huge support from friends, family and the local community, who helped the family raise almost $80,000, through Gofundme and various fundraising events.
“We’ve been very lucky in terms of having fantastic support. The response has been absolutely phenomenal,” Liam says.
For his parents, and older sisters Hannah, 13 and Rebecca, 12, the thought of Sean being able to live a more independent life is still somewhat ‘strange’.
“It’s a strange feeling, we’ve become used to seeing Sean get around how he does. The abnormal becomes normal,” Liam admits.
“We’ve also had to downplay Sean’s expectations to a certain degree, because he is not going to walk out of there.
“There is going to be a lot of work he will have to do afterwards, but he is a very determined boy.”
Having already overcome so much, his parents have full confidence that Sean will fight his way onto his own two feet. After all, the boy has aspirations of becoming an Olympic rower.
“The wish that I have for him is that one day he can step out of his wheelchair if he so wishes to do so and walk on his own two feet,” Liam says.
“It’s something most of us take for granted. To imagine that one day my son could do that, it makes all the past pain, grief and struggles worth it.”
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