THE extended family of a young Tamworth boy, who is one of just 2000 people living with Hollow Visceral Myopathy (HVM) worldwide, is ramping up its fundraising appeal for medical costs.
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Aidan Jachim, 11, was diagnosed with HVM, a rare genetic condition that causes a very slow digestive tract, frequent bowel obstruction, and a distended stomach.
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Aidan spends much of his time in the Sydney Children's Hospital, and when he is at home, requires around-the-clock care from his parents, Belinda and Shane Jachim.
A fundraising campaign launched to support the family has already achieved $1200 of its $220,000 aim – but the community is being asked to dig deep to help reach that total.
“We have started this GoFundMe Campaign to fund two permanent part-time registered nurses, the medication and the medical supplies to care for Aidan while we appeal the National Disability Insurance Scheme (NDIS) and their decision that Aidan's Disability is not a Disability recognised by the National Disability Insurance Agency (NDIA), the agency that governs the NDIS,” Aidan’s campaign manager Lee Akerman said.
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“If everyone donated just $10 (a cup of coffee and cake) only once and shared, we would quickly achieve our goal and give Aidan, Belinda and Shane the support they need.
“As we are reading this and discussing Aidan's needs, Belinda and Shane are providing 24/7, 168 hours-a-week care.
“The only reason Aidan was permitted to leave the Sydney Children's Hospital was by receiving a special exemption and Belinda and Shane receiving 120 hours of training, each.
“We need your help.
“Please watch this video, click on the donation link, and help Aidan with a donation.”
VISIT www.gofundme.com/Help-Aidan-Fight-Rare-Disease TO DONATE.