Support Jon’s journey to a more inclusive and adventurous future
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When Megan’s son Jon was four months old, she began to worry.
Shouldn’t he have better neck control by now? The last time she’d had a newborn had been almost a decade before, but she couldn’t remember her daughters struggling to hold their heads up at the same age.
This was all taking place in 2020, just as the first lockdown had just begun. Because of this, in-person medical appointments were difficult to get. The nurse on the phone assured her that it all sounded normal. So, Megan waited. But her motherly instinct kicked in and a few days later she pushed back. “He needs to see a doctor.”
The pediatrician knew what it was as soon as she saw him, and the testing confirmed the worst. “Jon has Spinal Muscular Atrophy. SMA Type 1.”
SMA is a condition affecting the muscles involved in movement, which progressively weaken and atrophy over time; this includes the muscles used not only for the general movement, but those that control swallowing and breathing as well.
Just a few years before Jon’s diagnosis, it would have been a guaranteed death sentence—Jon would not have made it to his first birthday. But a new gene replacement therapy and two other drugs have been designed which can slow or stop the progression of the disease.
While Jon received treatment shortly after his diagnosis, it couldn’t undo the damage and he had lost the ability to ever eat or walk unassisted. His lungs are weak, so he has to use a BiPap machine every night, and the normal colds and viruses that most kids brush off can leave him in intensive care for months.
Despite all the hurdles that Jon has already had to go through at such a young age, he is still a little ball of sunshine (or, as Megan calls him, ‘son-shine’). He loves getting out and about and exploring the world around him.
He’s active, sweet, obsessed with his two big sisters and, like most toddlers, has a favourite Wiggle (no one has the heart to tell him that Emma has left the Wiggles).
Jon loves to zoom around their country property in his power wheelchair, a whirlwind of activity. The second he catches a whiff of freedom, he’s off exploring among the chickens, alpacas, sheep and kangaroos (sometimes he’s a little *too* active, so the family are in the midst of training an assistance dog to help manage the speed!).
However, Megan is unable to take the power wheelchair in her car. While the NDIS will pay for modifications to a vehicle to make it wheelchair accessible, there are only a few models of car that can actually be modified.
As the NDIS does not help with purchasing a vehicle, it means that Megan can only take the manual wheelchair when she takes Jon out for play dates, café trips, playground visits, and all the other outings that most of us with toddlers take for granted.
While the manual wheelchair can be useful at home on the hardwood floors, Jon lacks the physical strength and stamina to use the chair on any surface that isn’t completely flat.
This means that he fatigues quickly and is unable to enjoy playing with his new friends when he’s out in the community. As well as this, as Jon grows it is becoming more dangerous for Megan to lift him and his manual wheelchair in and out of the car.
Megan left her job to become Jon’s fulltime carer since his diagnosis, putting further financial pressure on a family that is already swamped with medical expenses. This means that purchasing a new vehicle that can be modified is out of their each.
This where you can help. Jon’s dad, his sisters Lily and Imogen, his granddad and a group of around twenty friends are running 10km to raise money for a wheelchair-accessible car, to give Jon the opportunity to explore the world on his own terms. Naturally, Jon will be taking part too, with his granddad pushing his wheelchair.
The timing is particularly important as Jon starts preschool in 2024. A powerchair in the school environment would mean a smoother path, more inclusion, and brighter days for this wonderful little cutie, where he can focus on learning and having fun like the rest of his peers.
You can donate here to support this amazing family and be a part of Jon’s incredible journey.
