The Best Cupcake Challenge Ever

October 13, 2015


This year's Cupcake Challenge was the best one ever, and not because of the money we raised. We had a great day but the threat of Hurricane Joaquin kept some folks home and the $13,000 from the day was lower than last year.


The cupcakes were delicious and the children's festive decorations transformed the Cynwyd School.


This was all great, but that's not what I mean.


What made this year so special was the program that featured Leukodystrophy families from as far away as Minnesota who wanted to be a part of the day. The demands of caring for children with Leukodystrophy can leave families isolated. With all the medical equipment and the fears about a child's fragile health, taking a walk to the park is a major production.  To be honest, even when you can manage the logistics of going out in the world, sometimes it is easier to stay home.


 At the Cupcake Challenge, no one turns away, the children are the guests of honor.


For Leukodystrophy families, even the ones who have lost children, it is a time to be around families who understand one another's sadness and strength without  explanation or pressure to be "okay." So many times, well-meaning and concerned friends  think they will offend us to remind us about the child who died, as if you ever can forget your child is gone. We understand no can never tire speaking of these children.  At the Challenge, Leukodystrophy families greet eachother as long-separated relatives even when we have only communicated through Facebook or email before meeting in person.


The most important part of the day is that an entire community has come together to help children with a disease that most of the rest of the world has no idea even exists.


So yes, even with the cold and the wind and the state of emergency for our neighbors in New Jersey, it was the best Challenge ever because people knew they are not alone.

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