Ari's Bathroom

Ari is 9, going on 10 in April and has a smile that lights up any room. He was just 22 months old when he was diagnosed with the degenerative muscle-wasting condition, congenital muscular dystrophy, LMNA gene mutation. Ari has a particularly rare form of the condition, putting him among just 50 cases ever recorded worldwide. He has never walked, but zooms around in an electric wheelchair.

Ari had to undergo a barrage of genetic tests when they realised he was not meeting the developmental milestones expected for his age and was originally told he had Spinal Muscular Atrophy, as the markers for Muscular Dystrophy were too low. 6 weeks after genetic testing was run, it was confined it was CMD.

While Ari needs a lot of help for everyday activities, including showering, toileting, changing, feeding and turning in bed at night, he does not let the severity of the condition confine him!

Ari has weekly therapy through Ability Centre WA (Physio and OT) and various other appointments through PCH for speech, swallowing, heart and lung monitoring and general Neurology.

Ari has a bright, sassy, and hilarious personality and lots of friends who he enjoys playing online games with.

As he continues to grow, getting him in and out of the shower is becoming more dangerous and we are looking to have this modified for a safer experience for both Ari and his family caring for him.

Let's come together to give Ari the safety and independence he deserves.