A CHARITY GOLF day is being organised to raise funds for a young Bathurst boy who has a rare genetic disorder.
TEE OFF: Justin Evans, with son Saxon and Brad Constable from Bathurst Golf Club, is looking forward to a charity golf day which will help raise funds for the Evans’ family. 022514pgolf
Two-year-old Saxon Evans has Bardet-Biedl syndrome, a disorder that affects many parts of the body.
Symptoms include obesity, blindness and the presence of extra fingers or toes. The disorder can also affect the development of motor skills and the heart, liver and digestive system.
Saxon’s mother, Sharon Evans, said the syndrome affected approximately 150 people in Australia and those with the disorder usually became night blind before the age of seven and legally blind by the age of 15.
She said Saxon had obesity and was born with extra digits.
“He had an extra finger which he had removed, but he still has an extra toe so he can’t wear shoes,” she said.
“He has a fatty liver and a cyst on his kidney and also global developmental delays.”
Saxon, who will turn three next month, currently weights 27 kilograms and wears size eight clothing.
He has outgrown the age appropriate car seat and strollers and now has a wheelchair, which he uses because he has an unsteady gait and cannot wear shoes due to his extra toe.
Ms Evans and Saxon’s father, Justin Evans, are hoping to raise funds to purchase a larger vehicle to accommodate Saxon’s wheelchair.
“We are trying to raise funds for a bigger, more reliable car to fit us and his chair in for our travels to Westmead,” she said.
“By the time you put the wheelchair in the back, there is no room to fit anything else.
“We have been selling some of our things, books and toys that Saxon quickly outgrew, to get some extra money.”
Ms Evans said Saxon has 15 services and doctors who look after him, most of which are located in Sydney.
“He has had six appointments in the space of six weeks this year,” she said.
Mr Evans said the charity golf event would be a great chance for people to have some fun and raise funds for a good cause.
“I know a lot of blokes like to come out and have a hit,” he said. “It would be great to see lots of people come out and show their support.”
He said there would be prizes for the four-person ambrose event and said they were trying to get donations from local businesses for some raffles.
“I’d like to say a big thank you to Brad Constable here at the course for all his help,” he said.
The charity golf event will tee off at midday on March 23. Anyone who would like to attend or who wants more information about the event can contact Bathurst Golf Club on 6331 4144.
Those who wish to make a donation can head to http://www.gofundme南京夜网/6llmao
This story Administrator ready to work first appeared on Nanjing Night Net.