James is 11 years old
James Lekkas was diagnosed with Spinal Muscular Atrophy Type 2 at two years old, after his family’s local aboriginal playgroup noticed something and referred the family to a paediatrician. “After the playgroup shared their concerns and following diagnosis, James declined very quickly,” says Gary, James’s father. “Our social worker mentioned MDSA to us, and from there we connected with them and were given lots of help with equipment and the like. James doesn’t have any kids in his school who are in wheelchairs, so it’s great for James to be a part of MDSA.”
James is a MD Ninja and loves going to Camp Capacity every year to hang out with other children who face the same difficulties as him. For James, being part of MDSA is all about the social aspect.
“Seeing other children with the same condition he has is really important,” says Gary. “He gets so much social interaction and even when he gets his needle every four months, he has the chance to get together with other MDSA. There’s a real continuation of friendship there.”
Gary also credits MDSA with being the go-to support system for parents of children with neuromuscular conditions. “For the parents, it’s all about resources, knowledge, participating in events, and meeting parents with the same condition,” says Gary.
“Overall, the MDSA community is a small group of people that depend on each other. It really is all about the community aspect. I was recently in a car accident and had no idea where to find a rental replacement car that could accommodate James’s wheelchair. I went to MDSA and, even though they hadn’t dealt with this type of situation before, they were able to find a rental car for me; that’s just an example of how supportive they’ve been and how adaptable they are.”
Advances in technology also mean that MDSA can help James get access to equipment that changes the way he experiences the world, Gary says. “The beach wheelchairs are just incredible, when he uses those, James is just like any other kid in the water!”