The story of Stacie
Chylles was healthy, high energy little girl with no fears, no worries & full of life. That’s before she was affected by ROHHAD symptoms just prior to her 3rd birthday. After a year long battle with doctors & a lenghty hospital stay, Chy was diagnoised with ROHHAD Syndrome in Jan 2019. There are less than 150 cases in the world, and only 2 here in our home state of Louisiana. There is currently no cure and no real treatment other than a few clinical trials. Managing ROHHAD is to manage each health issue individualy as it comes. Meanwhile we make every day count. We hold on to hope for a research breakthrough that will give these rare kids a better way to fight. We share her story to raise awareness and help other families that are struggling to find answers as well.