My daughter Samantha is ten years old and was born with Johanson Blizzard Syndrome. She is deaf, and the most interesting spunky amazing child I have ever met. A VERY quick breakdown of JBS, JBS is a very rare condition that affects multiple parts of the body. The severity, signs and symptoms of JBS may vary among affected individuals. Characteristic features include hearing loss, pancreatic insufficiency; failure to thrive, contributing to short stature; abnormalities of permanent teeth; distinctive skull and facial features; and/or varying degrees of intellectual disability.

In July 2015 Samantha will have the once in a life time opportunity to meet children and adults like her and enjoy her first trip to Disneyland. I will be able to connect with parents that share my struggles and joy, learn more in-depth information from the JBS conference at Children's Hospital Los Angeles and watch my daughter finally come face to face with the children she's only seen in pictures. At this time we have found only around 25 people in the world today with JBS all through Facebook, that's how crazy rare this is! I'm hoping to bring awareness to her syndrome and also get help to make this a experience of a lifetime for her. I setup a gofundme account at http://www.gofundme.com/SamJBS please if you can share this I would be forever greatful. Thank you!