Danny’s Story
Danny Caron was born July 6th, 2003 . He shares his birthday with his Grandpa Augie. He was born in Carson City, Nevada and was brought home to Hudson, Wisconsin 2 weeks after his birth. Danny was adopted later that year by Matt, Michelle and Jacob Caron.
He was quite ill as an infant and toddler. He was delayed developmentally and obviously had special needs. He was and is today one of the sweetest humans you’ll meet. He touches people’s hearts and souls like no other.
When he was 11 we had switched Danny’s developmental neurologist. We feel it was a divine intervention that led us to discover he had a rare genetic syndrome, Cohen Syndrome.
We found the Cohen Syndrome Association (CSA). It’s a non-profit that helps children and adults with Cohen Syndrome and their families. They host an annual symposium that brings together experts in the medical field of optometry, hematology, pediatrics and genetics to teach Cohen Syndrome families ways to improve their lives. They advocate for research, education and support for Danny and all of his Cohen Syndrome Cousins. There are less than 1,000 children and adults worldwide who have this rare syndrome. The CSA is handing over the reins to the Cohen Syndrome Research Foundation (CSRF). The Danny Boy Open will be raising money for this non profit foundation. We have also founded the Danny Boy Foundation , Inc. (DBFI). The mission of DBFI is to celebrate and support children and adults with special needs and their caregivers. We also will be raising money for this new 501 c3 non-profit.
Danny and our family have been so fortunate to have such supportive and loving family, friends and community. The saying “It takes a village” pertains to Danny and our family. His life has been so filled with opportunities of adaptive activities and the most loving friends, teachers, personal care workers and even strangers we meet give and receive so much love to and from Danny. He skis, plays hockey, dances, sings, participates in the Special Olympics, and the famous Rhinestone Raider’s Cheer group. We’re so grateful. We also understand we all receive more than we give in regards to Danny. We would like to say thank you, thank you and thank you to all of you who are in Danny’s life.
Michelle and I are non apologetic Survivor fans and nerds. We have watched every Survivor Season. I have been talking about sending in an application to become a contestant for at least 10 years to the chagrin and ridicule of my family. This past year I applied. I also learned about a regional Survivor show called Live to Give. It’s a non-profit that hosts and produces this Survivor-like show all to help raise monies for many charities. They have raised over a $ 250,000 for more than 90 charities in their 7 seasons. I have been chosen to participate in Season 8 “ The Ramsey Roller Coaster”. Hence our family will be raising monies for the Cohen Syndrome Research Foundation and The Danny Boy Foundation Inc. in honor of this special human being Danny Caron.
