April 26, 2016

Since William was diagnosed last September, I have learned three things.

The first thing I have learned is how little I want to be in this position. I'm living every mom’s worst nightmare. My baby has a life threatening disease there no treatment or cure.

More importantly, the second thing I’ve learned is that all the clichés about motherhood are true. Moms do whatever they can for their child to have a happy and healthy life. What I want for William is no different, but Jeff and I need to go to more extreme measures to make it happen. For William to have a happy and healthy life, there needs to be a cure for Pearson Syndrome. We have unending hope that this is possible. Medical advances are happening so fast but we started The Champ Foundation to make a cure happen even faster. We are so lucky to already have a doctor affiliated with Harvard Medical School and Boston Children’s Hospital working on a Champ Foundation grant to begin finding a cure.

The third thing I have learned is that even though I am unlucky to have a son with Pearson Syndrome, I am still so fortunate. Specifically, I am fortunate to be from Buffalo, NY. You guys are, without a doubt, William’s biggest supporters. Since the day we launched the website, donations from 716 have streamed in. In addition to donations, the Buffalo community has supported us in so many ways. Buffalo Spree designed our logo, my Orchard Park neighbor built and updates our website, two friends from high school now living in Durham ran a race for the foundation, and then the Buffalo event!

The Buffalo Benefit at Riverworks was an enormous success. Before the event even started, we raised thousands of dollars through local Buffalo media. In the week prior to the benefit, local news outlets (4 radio stations, 5 tv stations) highlighted The Champ Foundation. Buffalo is not called “the city of good neighbors” for nothing. Over 500 people came out to support Champ and win amazing auction and raffle items. Local personalities and bands were encouraging, energetic and generated a fun atmosphere. Both winners of the 50/50, without hesitation, gave back their winnings. Hundreds of people bought a print of the “Rising Buffalo” painting. I saw teachers from elementary school, childhood friends and my parents’ coworkers. We had people travel home to the event from Colorado, Florida, NYC and Chicago. In the end, we raised OVER $70,000. Like I’ve said before, the Buffalo community makes my heart very, very happy.

Thank you Mom and Dad for planning this event. You’ve lived in Buffalo for over 20 years, and this event shows you are valued and loved community members. Thank you to all the businesses and people who donated items for the auction and raffle. I know a lot of people worked hard for this event, but I want to shout out the Dees, Laipples, Lalleys, Franjoines, Kollers and Markels. My parents are superheros, but even I don’t think they could have done this without you.

There are many days I feel overwhelmingly sad. I did not, however, feel sad last Sunday. I felt hopeful and supported. With the Buffalo community’s support, we are going to find a cure for Pearson Syndrome and cure all children with this terrible disease.

Buffalo, thank you for being champions for William and The Champ Foundation. We are so lucky to have you in our corner.