Did you know that one in every 2500 people has Charcot-Marie-Tooth disease (CMT)? There are approximately 20 people with the genetically-inherited condition in the Sutherland Shire and St George regions, however many of us still haven't heard of it.
Named in the 1800s for the doctors who discovered it, CMT affects the peripheral nervous system. It is frequently undiagnosed and at this point in time, there is no cure.
Symptoms include progressive weakness and muscle wasting of the legs and arms and for children with the condition, it can often lead to issues with self confidence.
This is according to Engadine residents Jillian and Peter Critchley who, for the last 10 years, have been hosting group activities for children with the condition to help them feel less alone.
"CMT doesn't impact their social development, it's purely a physical thing," said Mrs Critchley.
"Through CMT Aussie Kids we do camps that give kids the opportunity to do stuff that they otherwise wouldn't have been able to do physically, like going on a giant swing, doing indoor rock climbing, or going swimming."
Janelle Ward from Miranda has CMT and so does her son, 13-year-old Bryce.
She said her symptoms included walking with a gait and having limited dexterity on her hands and fingers, and both she and Bryce were "introverted".
"When he goes to [CMT Aussie Kids events] it makes him have more confidence, and he feels like he's with people who 'get' him," Ms Ward said.
Ms Ward nominated the Critchleys for a Leader Local Champion article for the work they do with kids and families with CMT.
Mr Critchley - who has CMT himself, as do the Critchley's two adult daughters - said the service they provided helped create a community for families and kids to connect and help each other out.
Through social media and video meet-ups, kids and parents chat about topics including learning to drive, dealing with the NDIS, and orthotics and mobility aids.
"Kids who suffer from CMT not only have a disorder, but they can be isolated and bullied and can suffer from lack of confidence," Mr Critchley said.
"When they're away on our camps they can do adventurous activities in a safe environment, it means all their peers have the same disabilities, and there's no fear of being bullied.
"We're both in it for the children. It gives us a lot of satisfaction when we connect kids with other kids, we see them building their confidence, and we see that they're feeling less isolated."
Find out more about CMT Aussie Kids and donate to CMT Australia research at cmt.org.au
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