Organizing an awareness and fundraising walk reconnected Classic LifeCare Alberta Leader, Britney Didier-Shaw, to a community of families with one common goal – providing support to people and families living with Prader-Willi Syndrome (PWS).
About 100 people showed up for the One SMALL Step Walk for PWS on a cool morning September 9,showing support and raising more than $30,000 for the PWS Association.
PWS is a rare genetic disorder that results in a number of physical, mental and behavioral problems. A key feature of PWS is a constant sense of hunger that usually begins at about 2 years of age.
“I used to be connected to the association and drifted away over the years because I didn’t feel as great of a need for support,” says Britney. “But it’s really nice to reconnect and be able to share with these families and hear their stories.”
Britney’s daughter Mazzy was diagnosed with PWS when she was two months old. Now a teenager, Mazzy participated in the walk, along with her sister, dad and dog, Osha.
“When we got the diagnosis at two months old, much of the information we read was quite horrifying,” says Britney. “According to what we read, my little ‘Poppet’ was going to change into a ravaging monster with a temper and bouts of rage. We read the weight would pile on, that few people lived past 30.
“As we stared to move through it, we created our own understanding of what it was. Symptoms can be quite different per individual and that knowledge helped us cope with the sadness of what we were presented with.”
Britney says the literature suggested “strict routines,” “military actions” around food and locking food away.
“We refused to live that way. We made Mazzy a big part of food, instead of pulling her away from it. I change my furniture around all the time. We change her room around. Mazzy has a lot of changes of scene in her life. She is certainly not a kid who can’t stand change.
“As Mazzy has aged, it is our eternal relief she is a genuinely happy girl, going to a mainstream school in a modified program. She is excited every night about the promise of the next day.”
Britney reconnected with some mothers from the PWS Association in December for a dinner and found herself volunteering to take over the organization of the annual awareness walk from a woman who had been doing it for several years.
“The former organizer, Stephanie, kept the social media piece, and I took on the organization of details like picking the park and the date, ordering T-shirts, organizing donors.”
Britney says the most important part for families facing PWS is connecting with other families and hearing each other’s stories. Every person with PWS has a unique journey but it certainly doesn’t have to be a journey all alone.
“The theme of the walk was A Step Towards Independence and I see independent living as a very viable prospect for Mazzy in the future.”
For more information about PWS and the PWS Association, visit: http://pwsaa.ca/
Below, left to right, Britney, Mazzy and her dad, dog Osha and Mazzy’s sister Piper.