A special contribution by guest blogger Diane Schantin
When Austin was born, our whole family was up at the hospital celebrating. I vividly remember the nurses coming in to check his vitals, watching their faces and hearing, “Oh my God.” His blood sugar was really low, so he was rushed off to the NICU. There was no diagnosis at the time. Jamie and Phil kept going back to Austin’s doctor for tests because they knew Austin’s floppiness and eating were not normal. Finally, 7 months after he was born, the genetic test came back that he had PWS.
Our family has all changed our lifestyle to help Austin succeed in every way possible. We've changed how we eat, how we store food, we eat buffet style rather than having dishes on the table during dinner. No seconds. We don’t talk about food. If you have a loved one with PWS, I’m sure you realize how many food references there are everywhere! It was also difficult with extended family gatherings. People just don’t get it—generally. Fortunately, most of our family tries to support what we ask for, even though they don’t understand the why. Austin looks healthy and talks normally other than repeating things, so many think, “Why can’t he just have some cake and ice cream? One helping won't hurt him.”
Early on, Mark and I wanted to support Jamie and Phil by donating to an organization that helps. We chose to support research because that is going to be what helps Austin’s future. When Austin was 4, Jeeni, my younger daughter, found One Small Step and decided to host an event at our local park 6 weeks later! Our family believes in ACTION. Her goal was to raise awareness and money. We had 100 friends and family show up that first year and raised $10,000 that first year, in 2014. The event has slowly grown, and this past year we had 15 families participate, 2 virtually.
I have been astounded at the research done in Austin’s lifetime. I have a grounded hope that he will live without hunger in the very near future, because of the relentless drive that FPWR board members, officers, and employees have. Reaching out to other families has enabled those families to see how sharing the need for research can enable their friends and family to help in a tangible way by donating.
One person who started fundraising this year was shocked that she had over $6K come in from just emailing the link to friends and family. I have heard that people WANT to help. Wow, have I ever seen that come true! I have high school classmates I haven’t seen in years donating every year as well as huge support from our church family. None of this would be possible without getting the word out via social media and email and making the ask. Though I'm great with giving, I hate asking for money; I absolutely am not comfortable with it. But this is my grandson, and now 17 families I have met will benefit because I humbled myself enough to ask.
One Small Step is not hard to do. Sarah Peden is a great resource who promptly responds to all my questions, and Melissa Demand—FPWR's Stewardship and Donor Engagement Manager—helps me navigate any donation questions. We walk for an hour around our church grounds (half a mile) where we have signs posted with pictures of the families that attend around the course. Some have PWS facts, others have something personal that either the family or the loved one with PWS wants to share. We have a raffle every year. People will buy $10 raffle tickets, and often buying the 15/$100 for a chance at items generally all worth over $500. We raised almost $8,000 this year on the raffle alone!!!!
I have met some amazing people through the One Small Event, whom I never would have met otherwise. New parents of a small child with PWS have been inspired by meeting older kids and adults living with PWS. Through social media, I get to watch all of the successes and cheer on our families. Our family has hosted eight One Small Step events, and I really thought I would be winding down, but how can I stop when research is exploding with discoveries and therapies? During COVID, thanks to participation from 15 families, we raised over $56,000. None of us individually could have done that, but as a whole, just wow. I’m still a bit awed we set a record for our area during COVID season. Friends, people are still wanting to be generous, so let them know what research is doing to benefit your loved one and give them an avenue to make it happen. We have families that don’t raise a lot of money necessarily on their page, but sharing their stories on social media in our event inspires people to donate to the family they do know.
Finally, Austin, starting around age 7, was amazed to meet others with his condition. He loves to see his friends every year and is planning to be pen pals with his friends from Yakima, WA, and Silverton, OR. He loves getting to have “his” event where people show up for him.
Hope, community, and inspiration make every minute worth hosting a One Small Step event, and the amount of money helps too. I begin by praying about details in February and deciding to not stress over success. My family is taking action and giving Austin his best shot in the best ways we know how.