Little Jonathon was born late in 2019 and diagnosed in 2020 with a rare genetic condition called type 1 Spinal Muscular Atrophy. SMA is a condition affecting the muscles involved in movement, which progressively weaken and become wasted (atrophy) over time. It is caused by the loss of specialised nerve cells called “motor neurons”, which are controlled by the brain and allow for muscle movement. S
ince his diagnosis, his mother Megan has become his fulltime carer and spends her time taking Jon to hospital appointments, therapy, and tending to his other needs whilst his father Andrew takes the financial burden. Currently Jon uses a manual wheelchair when out in public in which Megan lifts it in and out of their current family car. When out in the community Jon is unable to self propell in his chair as he lacks the physical strength and stamina on any surface that is not completely flat. This obviously affects his fatigue levels and takes away from what a 3 year old boy should be focusing on- playing, learning and enjoying life. Jon has no independence of his own to get around. At home, Jon has a fantastic supportive powerchair what allows him to explore the family property independently, on his own terms. Unfortunately, there are only a few models of car that can be modified to be wheelchair accessible. In Australia, the national disability insurance scheme (NDIS) will fund modifications to a car but will not assist in the purchase of a vehicle. As Jon gets bigger, so do the risks associated with lifting him and his manual chair in and out of the car. As you can imagine, this is a big price to pay for a low income family with 3 children. In an effort to raise awareness for SMA and to provide Jon with the accessibility and independence other children his age receive we are 'Jogging for Jon' by running the 10km Canberra Times Fun Run on the 5th November 2023. All funds raise will go towards the purchase of a new or already modified second hand accessible vehicle for a power wheelchair. Jon's sisters Lily and Imogen as well as his father are jogging for Jon along with other friends and family. Jon's grandfather Tom Frame will push Jon in the race and jog to raise money to give Jon the opportunity to explore the world on his own terms. Jon starts preschool in 2024 and a powerchair in the school environment would mean a better start, better inclusion and better outcomes for our beautiful boy.
