Four years ago we were blessed with a wonderful baby girl, Gracyn Elizabeth Mann, out little GEM.  Not only was she born prematurally at only 2.1lbs, but shortly after her birth we were told that she has this very rare condition called Cornelia de Lange Syndrome (CDLS).  Of course we had no idea what this was other than 1 and 10,000 children are born with this condition.  We spent the next few weeks educating ourselves on CDLS and connecting with the foundation.  We were told that Gracyn was on the mild side of CDLS but need to prepare ourselves on how to care for a child with special needs.

 Every time we held Gracyn, we could only see our beautiful TINY peanut and couldn't wait to get her home with us.  Our little GEM came home only 4 weeks after her birth at just 4 lbs.  Then, at 11 months after her birth, Gracyn got pneumonia and was hospitalized for 6 weeks.  She spent her 1st Christmas, 1st New Year, and 1st Birthday in the hospital on a ventilator fighting for her life, literally.  We almost lost her on New Years Eve, worst day of our lives.  This is when it really sank in how serious this very rare condition can be to our little tiny miracles.  Gracyn recovered from this illness and is one of the smallest little fighters I know, like all of our CDLS kids.  The foundation has been a great support system to us, we learned so much just from other parents and caregivers.

Tim is running 26.2 miles to help raise money to support the CDLS Foundation.  The foundation is a family support organization which exists to ensure the early and accurate diagnosis of CDLS, promote research into the causes and manifestations of CDLS, and help people with a diagnosis of CDLS make informed decisions.