Kennedee was diagnosed with Walker Warburge Syndrome. It is the most severe form of congenital muscular dystrophy and is extremely rare. Walker Warburg is always fatal in early childhood, claiming the lives of most of its victims before their first birthday.
Kennedee had an older sister, Kaidence, who was also diagnosed with this syndrome and she lived to be two months old. As we were advised with Kaidence, we brought Kennedee home on hospice and the NICU doctors said it was unlikely she would live as long as her sister.
Kennedee is now almost to her second birthday and she never stops inspiring those close to her. Kennedee’s seizures started when she was 6 months old and they are ever-evolving. Since we started CBD treatment, we have seen a personality we didn’t know Kenne had. Her quality of life was always unknown to me but since starting treatment I can see that she is happy:-) Everyday is a gift as cliche as that may be and the decision to start this treatment has made those gifts better than we thought possible.
Kennedee’s drive for life is inspiring and she has shown me many things about myself and life in general that could not have been taught any other way. We refuse to set limitations for Kenne, and are hopeful that she will continue to defy the odds with the help of this amazing plant as she already has up to this point.