Meeting Hunter

As CdLS Awareness Day approaches on May 10, 2014, Brenda shares this story to help us keep in mind that even the smallest voices and the shortest interactions can have a big impact on other people's lives, and hearts. 

Hunter is a young boy with a rare form of a more well known genetic disorder. I met him at a Rare Disease Day event in Hartford, CT, in late February. He was in a special chair that helped him get around more easily, and he rolled around the meeting space with ease. His mother and father joined him as first time attendees to the event, and were so happy to see the other rare disorder groups represented in our alcove of the Capitol building. 

"Hello," he said to me.
"Hi there. What's your name?" I replied.
"My name's Hunter. I have a very rare form of a genetic disorder, and there are only five of us in the country who have it."
"Wow," I answered. "That is very rare. What do you like to do, Hunter?"
"Play baseball," he said matter-of-factly.
"Yeah? What position do you like to play?" I asked.
"Wherever," he said. "I just like to play."

Hunter went on to speak later in the event (quite eloquently for any 8-year-old), and shared with us a project he had been working on in school, called "HOPE - Help Other People Every day." 

The idea behind the project was not self-serving, not rare disorder focused, but rather, to do exactly as he stated: help others, no matter what. Hunter was not focused on his disorder, but rather, what he could do to make the world better around him. 

Such a short conversation made such an impact on me. Such a small voice brought the room to silence, and me to tears. We could all take a few tips from Hunter.

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