Special Needs Dad 365

Kids Can Change the World
Earlier today, I shared a post from the Epilepsy Foundation of America about the Kids Crew. It just so happens that I was the one who wrote the original post. As part of my role at the Foundation, I manage the program.

On various occasions, I have told Allison that the Kids Crew program has the potential to make the most impact of any inititaive my family has created. Allison volunteers a substantial number of hours designing the polished look and feel. Hailey is the President and CEO and has traveled around the country to get more kids involved. Livy, as always, is the inspiration behind it all. Together, with my talented colleagues at the Foundation, we have all contributed to make it what it has become.

The journey of the Kids Crew started years ago with a conversation at our kitchen table. The goal was to build a program to teach kids about special needs and to show them what other kids with disabilities go through. Every month, we got together and invited a local nonprofit to present to the kids and parents. Later in the month, we supported the organization typically through some form of a fundraiser. The kids learned the importance of what the organization did in the community as well as seeing first hand the value of giving back. The group of kids grew from about 10 kids in our living room to over 50 in our local recreation center.

Over the years as we got involved with additional initiatives, the Kids Crew became too much for us to maintain and we decided to bring it to an end. That’s until my career with the Epilepsy Foundation began. As the story goes, I returned from a trip to Indiana and told Hailey about a mom I had met who had lost her son to SUDEP (Sudden Unexpected Death in Epilepsy). As I emotionally told Hailey about my experience, she was moved and asked how she could get more involved. I referred the conversation to our CEO, Phil, and his idea was to create a Kids Crew at the Foundation. Wouldn’t you know it, he asked Hailey to lead the effort!

A month later, we had laid out our plans to focus the new Kids Crew around educating kids about epilepsy, helping them to teach others and spread awareness, encouraging them to share their stories, and asking them to participate in events such as Lemonade for Livy. The focus may have changed, but the underlying message remained the same. When kids learn early, they become empowered and given a little guidance, they can change the world!

I feel blessed, honored, and saddened to read the stories that are sent in for new members. Many have had epilepsy for years but others have just been diagnosed. They face extraordinary adversity, however, go through life with such grace. We also have dozens of siblings who are involved because they watch their brothers and sisters struggling with seizures and want to do their part to be there for them. Many of these kids bring me to tears. I am also fortunate to see the amazing efforts the members put forth in their communities. The kids are rewarded with themed pins for the activities they complete. I am beyond proud of the work they do to create change.

As the Kids Crew growth accelerates, I feel stronger than ever that it will have a tremendous impact on not only the kids involved, but on their families and many others in their communities. What a joy it has been to see a small project grow into an international program that will eventually help kids all over the world. I look forward to seeing more of what these young superheroes can do!