Through 26 miles of walking, breakfast overlooking Central Park and plenty of New York-style pizza, two of the women who made Hope for HIE what it is today got to know each other a little better.
Claire Greer, one of the founders of Hope for HIE, and Betsy Pilon, president of the board for the nonprofit organization, met up in person in New York City after meeting online four years ago.
Aussie mom Claire was visiting the U.S. and Betsy decided she couldn’t miss the chance to meet one of the first moms she got to know in her HIE journey.
“Claire was instrumental to helping me find support right after we were home from the NICU. She and I clicked pretty early on personality-wise, and I was so inspired by her story of working through the trauma of HIE,” Betsy said.
Claire felt the same.
“Betsy has become a close friend over the past four years, and I couldn’t imagine making it all this way without seeing her in person,” she said.
After initially meeting due to their children suffering HIE at birth, the two began working together on building Hope for HIE.
So that was an obvious topic of discussion, but they also spent some time getting to know each other, Claire said.
“When we weren’t eating classic New York pizza and other treats, we talked pretty constantly and got to know one another even better than we already did. We also talked about our work on Hope for HIE and our passion for helping others with the same diagnosis,” Claire said.
Their trip packed New York City experiences in over two days, with a trip to the top of Rockefeller Center, a walk across the Brooklyn Bridge, visiting the 9/11 memorial, riding the Staten Island ferry and of course pictures in front of the Hope sculpture.
For Betsy, the trip was an inspiration and a reminder to make the moments of life what you want them to be.
“We have these moments, and you can choose what you do with them. Claire inspired me to do more to help other families. People need Hope for HIE to be that source of support and encouragement to take one moment at a time, even when there's that constant grind of ‘wait and see’ and potential blows that come up along the way,” Betsy said.
“Hope for HIE is so grounded in trying to form connections, and the power of offline connections, that it seemed like a ‘must do’ to really live out that mission. I had to take the opportunity to thank Claire in person for all she has done for me personally, and for all of our families.”