There’s no cure for Stanwell Park boy Caleb Clark’s rare disease – but that doesn’t mean he and his family can’t have hope.
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The four-year-old has a devastating and fatal neurological disorder called Infantile Neuro Axonal Dystropy, or INAD. Many children with the condition do not live beyond 10 years old.
However Caleb’s parents Sam and Ailee are banding together with families in the same situation across the globe to raise awareness, and funds for research.
As part of that the couple will participate in the Splash n’ Dash Festival at Wollongong Harbour on February 25, and are inviting others to join Team Caleb or donate to it when they sign up for the event.
Their fundraising goal is $5000, which will go to the INADcure Foundation, a US non-profit organisation funding promising research into gene therapy.
“INAD is a condition that affects about one in a million kids – and we only know of one other child in Australia that has it, but have connected with others in the US and elsewhere,” Mr Clark said.
“Typically children with INAD develop normally at first, but then they start losing skills and regress with the condition eventually taking speech, movement and vision.”
Caleb was reaching all his milestones up until around 12 months, then his parents noticed a decline.
The little boy is now in a wheelchair, mostly unable to move, is solely tube-fed and unable to communicate verbally. He can smile though, and does so often.
“He was always a happy little fellow – and he still is,” Mr Clark said. “He’s a gentle soul and he’s always smiling.
“He loves swimming, he loves being held and cuddled, and he loves the Wiggles – he even got to meet them last time they visited Wollongong and he couldn’t get the smile off his face.”
Mr Clark said the day Caleb was diagnosed was the “worst day of my life”, but he wanted to focus on the positives.
“For him it’s about maintaining quality of life, so we want him to spend as much time as possible doing the things he enjoys, with the people he loves,” he said.
“We also want to try and make something good come from all the goodwill and support we’ve had which is why we’re raising money to make a difference for others.’’
Caleb, who attends Para Meadows School in North Wollongong, is under the care of a team at Sydney Children’s Hospital.
Mr Clark said, as with most rare diseases, there’s was not much funding into the condition.
“Usually fundraising is left to the families of those affected,” he said. “Such as the INADcure Foundation which was founded in 2016 by a US couple after their daughter was diagnosed.”
Mr Clark will compete in the ocean swim event of the upcoming festival, while Mrs Clark will participate in the sand run with their six-month-old daughter Ellie.
Donations can also be made direct to Caleb’s fundraising page at tinyurl.com/calebclark.