Help Kenzie Overcome her disorder

Our 3 year old daughter Kenzie was born with a rare genetic disorder that was not fully discovered until she was between 1 and 2 years old.  Due to the disorder Kenzie has growth delays and cannot walk.  She also suffers from speech problems and dystonia ( extra movements of her arms and legs that slow down her development as well).  Unfortunately, the disorder also has caused Kenzie to have several seizures resulting in hospitalization.   In order to get Kenzie the best possible care we enlisted the help of a team of doctors at Boston Children's Hospital that have been keeping up with Kenzie and treating her symptoms.  Kenzie' s disorder is rare enough that it has not been officially named yet, and she is about one of six patients worldwide that her doctor has been able to find.  It is currently being researched, however. What this means is we really don't know what the future holds for Kenzie developmentally and otherwise. She is a very outgoing little girl who loves to play and laugh.  She has a wave and smile for everyone and will blow kisses af strangers!  We want to continue to get her the best help possible which will require several trips to Boston (we live in Maine) every couple months.  We have two appointments in March alone.  Kenzie also requires traveling to Boston for procedures which require her to be under anesthesia, and there is the possibility of surgery towards the end of the year.  The majority of these trips require overnight stays in hotels, food while we are away, gas, and have been causing a lot of wear and tear on our vehicle.  Kenzie is also in need of new orthotics, or braces for her legs and torso.  These, along with meeting insurance copays and deductibles, and a couple of prescriptions that insurance does not cover can take an incredible toll.  After our last visit to Boston, it has become apparent that our trips down are only going to increase.  Therefore we ask as a family for your generosity, even if only a few dollars, and if nothing at all please share Kenzies story to keep it alive and help get her the best care and hope for the future possible. This is a picture of our Kenzie at her worst and what we are trying to avoid.  Keeping Kenzie healthy and seizure free while trying to give her a good quality of life and be as normal a 3 year old as possible, is not easy! Thank you !!!