“Did you know wind makes sound??”
That was a text I received on March 30th, 2025 from the daughter of one of my best friends. 17 year old Ella Coonen had gotten hearing aids two days before, and we finally found out how little hearing she’d actually had.
With recent genetic testing it was discovered that she has Ehlers-Danlos Syndrome (EDS). When paired with a rare gene mutation, this will cause her to completely lose what hearing she has.
Ella decided to do something about it, and made a list of sounds that she wants to experience before her hearing is gone. Our documentary, “The Sound of a Bucket List”, is following her on this journey to discover 16 sounds that she wants to hear while she still has the ability.
We are in the process of lining up donated experiences for Ella with airlines, performance groups, and others. Even with those cost saving measures, working with what money is in my bank account will not be enough this time.
We are estimating to be working on this film through the summer of 2026. To do this properly, we are looking at a budget of approximately $167,000, though this fundraiser is set smaller with incremental increases. This would include at least 24 days of shooting, expert interviews, post production, and marketing.
Whether we have the money or not, we will find a way to make these auditory adventures happen. Nothing is more important than Ella having these experiences.
The movie itself will serve 3 purposes.
- It is a gift to Ella. It is documenting these experiences so she can revisit and relive them whenever she would like.
- It will spread awareness of EDS which is estimated to affect 1 in 5,000 people worldwide. There is currently no known cure for Ehlers-Danlos Syndrome.
- It will let the audience become part of Ella’s journey of discovery, as she has these experiences for the first time before she must confront a world without sound.
Ella is being interviewed for the film on Saturday, September 20th. The first sound experience will happen the very next day. We currently have seven more sound experiences scheduled, with more being arranged every week.
Thank you for being part of this journey, and helping bring Ella's bucket list to life.
Organizer
