The events of our life from my perspective. Inspired by a little boy.....
Monday, September 5, 2011
Introducing the 4p- families
Kammy's Riders with the kids
Kammy's Kause is the largest fundraiser for 4p- research and awareness in the U.S. Tyler's syndrome is Wolf-Hirschhorn and is the main one included in this. 4p- means that there is a deletion (-) on the petite arm (p) of the 4th chromosome (4). Soooo, it goes like this: Jared has a daughter named Kamdyn who was diangnosed with 4p-. Jared is also in a band called Breakdown Kings. Years ago, he started a music festival and dubbed it Kammy's Kause that has grown bigger and better every year. This festival lasts over 2 days and has many midwest bands who come and volunteer their talent and time. He has since also added Kammys Ride. This event was in Fortville, Indiana which worked out because we were up in Indy all week for appts and it was only 45 minutes away.
This was such a great event and 11 other 4p- families from around the US had made the trip. It was a great experience to meet other families and connect with people that "have been there". We laughed, cried, and danced together. Jared also did a balloon release and tribute song for all that 4p- kids that have passed away and there was not a dry eye in the place. It was great to see such a diverse group of people coming together to support a cause so dear to us.
Great music-Great fun and I can't wait until next year!!!!