Kyla takes on every day with joy, enthusiasm, and determination. She is so curious and loves chasing around her cat and dog. Her many facial expressions - especially her surprised face - will bring a smile to anyone’s face.

So anyone can assume our world took an abrupt turn when we were told our beautiful, 21 month old Kyla’s genetic results came back positive for a rare genetic disorder called Smith-Magenis Syndrome (SMS). SMS occurs when one of the RAI1 genes on the 17th chromosome is deleted or mutated. 

SMS explains the slight developmental delays she is currently experiencing. As she gets older, SMS may cause her to experience some behavioral difficulties, cognitive challenges, sleep disruptions, and a host of other physical ailments. But, there is hope that these difficulties may be alleviated one day. 

There is incredible research being done and a roadmap in place to have gene therapies ready for clinical trials by 2030. But, before the ultra rich pharmaceutical companies foot the bill, there needs to be tangible proof the therapy works in animal models. Until then, the research relies on fundraising from everyday people like you and me. 

Your donation will go directly to the research being done that has the potential to dramatically alter Kyla’s life, and the lives of many other people with SMS.