The Lake Hayes community’s gathered to raise money for one of its own, a little boy diagnosed with an incredibly rare genetic disorder.
Three-year-old Levi Vallan-ce can’t walk, talk, and struggles to sit.
He’s one of just four people in New Zealand, and about 200 in the world, diagnosed with a mutation on the GRIN2B gene, which is responsible for cognitive, sensory, emotional, motor, and autonomic functions.
Levi’s parents, Lauren Moore and Dusty Vallance, were at The Hayes last Saturday night for a fundraiser for their son.
“It’s pretty hard,” she says of her son’s condition.
“But despite all his struggles he’s a happy boy with the best smile.
“A GRIN2 diagnosis is ultra-rare and a fairly new discovery.
“Since there are so few known cases, we don’t know much about the long-term quality of life.”
There’s some government funding available, and Moore says the Child Development Services team based at Dunstan Hospital have been great with Levi’s therapy.
But, she believes there’s a lack of funding and support services in the Wakatipu area for children with disabilities.
“Such as a heated physio therapy pool, and access to services that you would normally get at a base hospital without travel time and accommodation costs.”