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What kids and families are saying about the 2016 CLOVES Family Conference:
"We just wanted to say you are all some of the tallest and strongest people we have ever met and thank you for making us part of your family struggle, we have learned so much. You all made us feel so welcome and just wanted to let you know no matter how hard the struggle may be, you are doing an amazing job . Stand tall and stand firm love from all of us." - Parents of a child with CLOVES
"This is more fun than our own summer camp!" - Child with CLOVES
"I made a new best friend here!" - Child with CLOVES
"Why did we travel to Boston? I came to connect my child to this team that has seen more people with CLOVES than anywhere else in the world. It was tremendously powerful to interact with such dedicated doctors and staff, and to know they are making progress. And we travelled to be among other families affected by CLOVES, and know that we have an understanding and support from our shared experience. I saw a lot of resilience and hope in that room. It's worth it for a connection that will help carry them through the hard times that come with CLOVES." - Mom of a child with CLOVES
"Last night we finally met our CLOVES family that we have only known via FaceBook or emails. It was a little nerve wracking for us, especially my son, but walking into that room was a life changing event for us.
My son was so shy at first, not knowing what to expect, but he did amazing after a little nudge. I sat there just watching him interact with the other kids. I witnessed something last night I haven't seen in a very long time. I saw a boy that wasn't afraid to be be himself. I saw him throw caution to the wind and not hide anything about himself. Seeing him open up so easy did bring tears to the eyes.
After the conference was over and we were heading back to the hotel Rylan said something that I have wanted to hear for so many years. He said "Mom I don't want to leave my new friends, they are all just like me" I asked him what his favorite part of the whole day was and his exact words were "hanging with the cool kids". I want to thank everyone for the warm hellos and the open arms. This trip has helped me, as a parent, to open up and actually talk about the hard stuff and not have to worry about trying to explain myself." - Mom of Child with CLOVES