At heart, three-year-old Adam Taylor is just like any other little boy his age with a love for Thomas the Tank Engine and a cheeky smile, but in body he suffers from a rare and incurable illness.
At just two years of age, Adam was diagnosed with mitochondrial disease, a progressive genetic disorder that can weaken the muscles and impair development.
Mitochondria are tiny pieces inside each cell in the human body. Known as the powerhouse of the cell, they are a crucial part of survival and responsible for 90 per cent of cellular energy.
But for an estimated one in 4000 people, those mitochondria can stop working, resulting in symptoms like Adam’s.
“We don’t know what the future holds,” mum Jenny Taylor said.
“But he is progressing and there are so many symptoms he could have and doesn’t so we are counting our blessings.”
Adam’s condition has left him struggling to walk and while the family are full of smiles and laughs and are yet to give up on seeing him walking, it can make things difficult.
While nothing is too much for the son she clearly adores Mrs Taylor was beyond grateful on Wednesday as she received a state-of-the-art wheelchair suited to Adam’s specific needs at the Griffith Early Intervention Centre, making both of their lives easier.
Before the wheelchair, Mrs Taylor had to take Adam places in a pram.
Funds for the chair, estimated at a staggering $9000, were kindly raised by the Hillston Lions Club with each dollar matched by the ACT public health fund.
While now on its smallest setting the chair will allow for Adam’s eventual growth – set to get him from point a to point b until he is at least 10 or 11.
It is perfect timing, according to the men from the Lions club, who assured Adam’s parents by then he’ll be wanting something with a motor.
While he can’t yet verbalise exactly how he is feeling the chair is already a clear hit with the man of the moment.
“He doesn’t adapt to change that well but he just loves this and we just appreciate it so much,” Mrs Taylor said as she made a heartfelt thank you to the representatives of the Lions club present on the day.