Jasper Lyon was never meant to live after his first birthday. In fact, he was never expected to leave the hospital after his birth.
But the Newcastle kid has defied all medical predictions.
Jasper has Costello Syndrome, a rare genetic disorder that affects every cell in his body.
Worldwide there are about 1000 recorded cases and only two children in the world have the same scale of mutation.
On top of that, he also has a very rare, life-threatening form of epilepsy called SCN1A and can suffer over 50 seizures per day.
He is the only person in the world to have both conditions.
It means he can’t meaningfully move, speak or really communicate except through facial cues like moving his eyebrows.
Against all the odds, Jasper has just turned four years old.
Recently he also took his first reflex steps, the biggest moment in terms of his development, indicating one day he will walk with the help of a walker or have some type of mobility.
“Incredible,” is how his proud mum Sas says of when he first walked.
She said that it was a “100 per cent miracle” he has got this far. “His life expectancy reach goes up every day he is alive. He is a unicorn, he really is running his own race.”
Jasper who spent the first eight months of his life in hospital has been able to live at home through weekly visits of a complex support team of occupation, speech and physio therapists as well as regular contact with the specialist team at John Hunter Children’s Hospital.
The NDIS Complex Support Needs pathway has also provided vital support.
Sas says she is “exhausted but hopeful”.
“The hardest part is that he is so vulnerable,” she said. “The world isn’t built for children like Jasper. Expanding people’s understanding of what ‘quality of life’ means is also a battle that we fight every day. Different does not mean less.”
“We operate under the proviso that Jasper’s life is his own life and that his life is no less than either of our other children or us, it is just different. We completely understand that Jasper is profoundly disabled, and we are at peace with that — now we focus on parenting the child we have, not the child we thought we would have.
“The love you have for a child with a disability is the same love as for a child without a disability, in fact you learn to celebrate the wins a lot more and slow life down to appreciate every moment.”
She said that because of the rarity of Jasper’s conditions, they have access to the best specialists and are currently in the process of a medical trial from the US using cutting edge drug treatments.
Through the treatment Jasper has begun to build muscle mass that was otherwise thought to be unachievable for him since beginning what they affectionately call his “mouse meds”.
“Access to exploratory treatments is often the only way forward for kids like Jasper,” Sas said.
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“As a family, having a child who lives with profound disabilities means that life takes a completely different pathway than we would have otherwise,” she said.
“We are much better parents and people for having him. We adore him, and so do his sisters.”
carla.mascarenhas@news.com.au
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