The Story of Haley and Poppy
We would like to introduce ourselves. I am Haley Hilt, a 13-year-old CDKL5 girl and my partner is my Poppy. He has helped Mommy and Daddy care for me since birth. We live together a stone’s throw from Albany NY. I have a younger sister Emily (9) who is special herself. She has short gut syndrome and you will hear from her in due course. My Poppy is retired from his professional consulting firm and he has been busy in the rare disease community for almost as long as I have been alive. It has been a few years since we have written a blog and it is good to be back. Oh I forgot to mention that Poppy is a bit older than me he was born in 1943 and is my grandfather.
Boston Children’s Hospital was kind enough to feature me ad my family in one of their feature articles in VECTOR: Epilepsy Patient by Patient and Neuron by Neuron.
We recently testified before the FDA in a forum organized by the International Foundation for CDKL5 Research and the Lulu Foundation and it was suggested we write a column on chatting with children such as myself, many of whom neither walk or talk, such as myself. So here we are!