North Vancouver's Allison Jones knows all too well the benefits of a supportive community.
A mom to a four-and-a-half year old with two rare conditions, Jones is grateful to her peers, other parents of children with special needs, whom she's come to know through her ongoing involvement with the Rare Disease Foundation's family and patient support programs.
That commitment to supporting others will no doubt come in handy when next Saturday, Sept. 26, Jones and her team of eight other women will tackle the Whistler Mudderella, a non-competitive, five to seven mile long, muddy, obstacle course designed by and geared primarily towards women.
"Our motto is: We start together, we finish together. So if we have to slow down, we slow down for a teammate, but we're going to finish together," says Jones, 43, a married mother of three boys. More than about finishing the gruelling course, Jones and her team have dedicated their participation to the Rare Disease Foundation and are using it as a means of raising funds and awareness. "Meeting the parents at the Rare Disease Foundation, I couldn't have gotten through a lot of it without their support. They've become almost like a second family.. .. All of the programs that they do for the families, I just want to keep it going. Anything we can do to help, I'm all over it," she says.
Jones' son Max was diagnosed with Weaver syndrome, a rare overgrowth disorder, as well as Polymicrogyria. "That's a rare brain malformation that causes developmental delays. He can't walk yet and we are working on getting him to speak one day," says Jones.
Max also has epilepsy and so experiences seizures (related to his Polymicrogyria), and uses a wheelchair as his main mode of transportation.
Despite his challenges, he's a happy guy and just started kindergarten at Capilano elementary.
"We pretty much treat him like we treat our other two children, we just adapt it. So he's always out in the community and everyone in the neighbourhood knows Max," says Jones.
In light of her son's diagnosis, she attends the foundation's monthly Vancouver Area Parent 2 Parent Resource Network meetings held at B.C. Children's Hospital, intended to provide parents with emotional support and an opportunity to meet others facing similar challenges. The sessions also feature a guest speaker on a variety of topics. Jones also just started volunteering with the organization and hopes to lend a hand with upcoming events.
Joining her on her Mudderella team, dubbed Max's Bombshells, are friends, old co-workers and a mother of another child with Weaver syndrome. Her co-captain is Christy Slusarenko, a 38-year-old Port Moody resident who served as Max's one-on-one support person when he attended Capilano University Children's Centre. "That's how I met her, at daycare, just talking to her every day, talking to her about Max," says Jones. "We've become really good friends," she adds.
This is the second fundraiser Jones and Slusarenko have done in support of children with special needs, having participated in the Easter Seals Woman2Warrior, another female-oriented charity obstacle adventure race, benefitting the organization's camp program, last May at Burnaby's Swangard Stadium.
"There were three of us on that team and we had so much fun that we thought we would take it a step ahead, and we signed up for the Mudderella," says Jones, adding she hopes to make this an annual fundraiser. "Who knows, if there's another obstacle race coming up, we may sign up for that too," she says.
To support their fundraising, visit, max.causevox.com/allison-jones. For more information on the Rare Disease Foundation, visit rarediseasefoundation.org.
For more information on the Whistler Mudderella (registration: $129/$140) visit mudderella.com.
