First, we would like to introduce ourselves. I am Haley Hilt, a 12-year-old CDD 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 the Haley and Poppy blog and it is good to be back.
We recently testified at the Patient-Focused Drug Development Meeting at the College Park Maryland Marriott hosted by the IFCR and the Loulou Foundation. Silly Poppy surprised people when he read my testimony and introduced himself as Haley Hilt, a 12-year-old CDD girl.
We are here to talk about an issue that is very important to us, our communication.
I think I played a crucial role in convincing Poppy and my parents that I Am Here or, as close relative once observed about me “all my lights are on inside my head”. This CDD girl is me struggling to get out. It is not easy for us to do. Our problems are quite diverse and our barriers are unique but with the community’s input, we will find a way.
Poppy used to play the guitar a lot and a fellow musician once commented on his style as “leaving a lot of space”. He took it as a compliment since notes need space and rest. In sum, what I don’t say and how I convey it, is communication. We believe that all CDD children are strong and willful, which is the foundation of volition, which screams to the high heavens that we have intent. And if you have intent you have already got what it takes to communicate. You just need a way to convey your intent. Now you know why Poppy writes my intentions. I have them and he types them. However, he has promised me that until you get to know me better he will not share my bad intentions,
The brains of CDD children are intact. Our architecture is in place. The science seems to say that connectivity is the problem. My receptive communication is intact, therefore I have opinions. Unfortunately, this is a world of speed and that we don’t have. However, if you slow down and linger with us you will be rewarded.
These chats that we will have are less about us and more about our worldwide community of CDD children, their parents, siblings, caregivers, teachers, therapists, doctors, bus drivers, aides and scientists familiar with us. We will strive to bring their voices to you and between us, we will find our way forward. And last but not least we want your stories of communication. We want all of you to jump in and help us and each other.
Be aware that we are plowing new ground and tilling this new soil is not easy. But our collective wisdom will create new science. Most of all it will help us hear or see or sense each others intents better.
Haley and Poppy