Meet Tarek, Riley and Vanessa
For Vanessa, there’s nothing quite like seeing her kids just get to be kids. But despite her wishes and their ages – Tarek is nine and Riley is 13 – chances for her sons to make those carefree, mischievous childhood memories can be surprisingly rare.
Both boys live with Duchenne muscular dystrophy, a neuromuscular condition that causes progressive muscle weakness.
“They were diagnosed when Riley was four and a half years old,” Vanessa says. “I had just had Tarek. He was a baby, nearly four months old, when he was diagnosed along with his brother.”
Finding MDNSW and Kids Camps
After being introduced to Muscular Dystrophy NSW (MDNSW) through an Occupational Therapist, Vanessa found herself surrounded by a support network of “people who just get it.”
Through MDNSW, the boys began attending community events, then camps – and they were hooked. In fact, Tarek only recently returned from his second Adventure Camp, held at Stanwell Tops.
“Camp for them is an exciting adventure,” Vanessa reflects. “It’s an opportunity to do activities they don’t generally get to do when they’re at home or school.”
'Camp is awesome'
Vanessa has seen her boys grow in confidence and independence, especially Tarek.
“Before his first camp, he was really dependent on us. He wasn’t confident to go out of that secure family environment… Spending time away from the family was a really different experience for him. It’s given him the confidence to now go and be part of a different group and have support from different people as well.”
When asked what he loves most, Tarek says, “The activities and how much fun I’m going to have with my friends.”
For Riley, it’s “getting to meet my friends and hang out with them for a week – and it’s pretty fun doing pranks on everyone else.”
Filled with hope
The boys light up when they talk about camp – recalling favourite activities, close friends and top-tier pranks. It’s clear they’ve made memories that will stay with them for life. And that’s all any parent wants for their children. It’s something Vanessa holds close.
“My hope for the boys is that they find positivity and enjoyment in any of the activities that they can do. They often miss out on a lot of the fun experiences that other kids get to do. So I just really hope that they continue to still have those positive experiences, regardless of all the hard times and to keep building those memories."
MDNSW’s camps have turned Vanessa’s hopes into something real: two boys coming home full of stories, confidence and joy.
