14-year-old Ricky Ellul from Craigieburn has Neurofibromatosis, a rare condition that causes tumours to grow in his brain. The tumours have affected intellectual development and his sight, meaning he is now legally blind. However, they don’t stop the ever-positive Ricky from playing double bass, the drums and going tenpin bowling.
The uncertainty of Ricky’s future and the complications that come with his condition has put pressure on his family – parents Mario and Silvana, and Kristina (18), Adam (17) and Bianca (15). The family has endured Bianca having back surgery to assist with scoliosis, and Adam will soon have to an operation to correct severe flat-foot.
To help ease the pressure, Ricky and his family have been receiving special help from a trained home volunteer provided by Very Special Kids.
Volunteer Sam Fahnle went through the training in 2014, and now helps the family by taking Ricky out on weekend excursions, including his favourite activity, Tenpin Bowling – an activity Sam also loves.
The few hours without Ricky in the house on the weekend gives Silvana a chance to have a break and help out her other children, and most importantly, Ricky loves his time with Sam.
The friendship between Sam and Ricky has flourished, with Sam attending Ricky’s birthday and being the first person Ricky called when he found out his tumours had slowed their growth.
“Being a boy, it is good for Ricky to have a male friend to talk to,” says Silvana, “Having a male volunteer to spend time with gives Ricky opportunities to do activities he enjoys, but might not get to do as regularly otherwise.”
Sam is buoyed by the knowledge that his volunteering has a positive impact on Ricky and his family and is eager to recommend volunteering with Very Special Kids to other men. “It’s so worthwhile for the family. It’s only a few hours out of my time and it means so much to Ricky,” says Sam.
Please call 9804 6222 to find out more about exciting volunteer opportunities with Very Special Kids.