2016 Pittsburgh Walk for Apraxia Celebrates Apraxia Stars
After months or even years of hard work, everyone needs a break – maybe even a little celebration.
E.J. is almost 3 years old. He’s been to over 100 speech therapy appointments in the last year of his life alone. Last weekend, however, E.J. and his family were celebrating. The Pittsburgh Walk for Children with Apraxia of Speech brought over 780 people together, raised awareness about apraxia, and raised over $54,000 dollars, but most importantly, it celebrated the hard work of E.J. and other children with Childhood Apraxia of Speech (CAS) who are fighting to speak.
As a Walk team, it’s easy to get lost in the details – did everyone register on time? Does every family member have a ride to the park? Are there going to be enough T-shirts for everyone? But at the entrance to the park, that all fades away. It’s not about the T-shirt, it’s not about winning the raffle, it’s not even about how much money is raised at the end of the day. Ultimately, the Walk is about celebration. It’s a day to celebrate the kids that work so hard every other day of the year to find their voices.
CAS is a difficult neurological speech disorder in children that is often misdiagnosed or misunderstood due to lack of awareness surrounding the disorder. Children with CAS have a clear understanding of language, but have difficulty planning the movements of the jaw, lips, and tongue to produce sounds and words. Most children with apraxia like E.J. need years of speech therapy to help them find their voices. “He works SO hard every single day,” said Emily Dahlke, captain of ‘Team E.J.’ and mother to E.J. For children with CAS, learning to speak is often a long road that requires hours of therapy, concentration, and a work ethic that many adults could only dream of.
“The Walk was like a party for all of the children,” says Emily. “My son kept saying ‘party.’ Even since the walk has ended, if he sees one of us wearing a shirt from the walk he says ‘party!’”
And the walk did look like a party. The parking lot of the Boathouse at North Park was transformed – what was usually just a concrete expanse now held tents, a stage, and hundreds of excited family members and friends sporting the same telltale white, purple and pink “Walk for Apraxia” T-shirt. Kids bounced between the bright blue Imagination Playground and the craft station. They made crafts, they had their faces painted with stars, cats, and flowers. A suburban Pittsburgh fire truck sat nearby, awaiting anyone who wanted to climb in and look around.
One of the biggest crowd pleasers were members of Ghost Base, the Pennsylvania and Delaware chapter of the Rebel Legion milling through the crowd. Luke Skywalker posed with storm troopers and families, Princess Leia pet puppies, jawas slunk around and joked with kids. Ghost Base’s mission it is to give back to the community through bringing joy to events like this Walk for Apraxia.
Team E.J. was the Top Fundraising team of the Pittsburgh Walk for Apraxia, finishing out at $8,725 dollars raised total. “The more I talked about the Walk, the more we raised. I definitely stepped outside of my comfort zone,” said Emily. “We are now a part of the CASANA family and I know we made the right decision to Walk for E.J. and all the other shining stars.” All funds raised go to supporting CASANA’s programming that helps families gain access to proper speech therapy, supports speech-language pathologists in understanding apraxia, and increases funding for apraxia research.
Ro-Dog’s pack, the top fundraising team for 2014 and 2015, was another major fundraiser this year, raising a final number of $3,360. Dan Pschirer, Rowan’s dad, said that the most powerful moment of the day is the medal ceremony, when the children with apraxia are called on stage to receive medals to honor all their hard work. “We get the lump in our throats when the children receive their medals,” he said. “Just the excitement and fulfillment on their faces says more than words can describe.”
Stories from families that participated in the Walk communicate a clear theme: Yes, the fundraising is important, but that’s not what the day is all about. It’s a day for families to come together, to share laughs and tears over their struggle in the journey of apraxia. It’s a day for the children to play, to have fun, and to just be kids.
The Walk is about one big idea: No matter where you or the person you know with apraxia is on this journey, this day is for you.