A little over two years ago, two good friends of mine, whose daughter Fera was born just a few weeks before my daughter, came to me with concerns about their baby. Fera was about 9 months old and at a routine check-up her doctor had found that her weight gain had slowed.
When her mother, Vanessa, reached out to me about this, I wasn’t too worried – so often in pediatrics health concerns turn out to be nothing, or small hiccups that get better on their own. Not to mention the fact that I hated to imagine that my friends’ baby could be sick. But once I saw Fera’s growth curve and heard all the details of her symptoms, including the fact that she was fussy and always thirsty, constantly soaking her diapers, and preferred water to her mother’s milk, I was alarmed. So I arranged to have Fera seen by a colleague and tested at the clinic where I work.
Within a few weeks, it emerged that something was very wrong with Fera. She was losing everything through her kidneys: water, electrolytes, sugars, proteins. Once that was clear, Fera was hospitalized, and as you’ll hear from her parents, Vanessa Bonneau and Sylvan Lanken, she was diagnosed with cystinosis, a rare genetic disease that causes the amino acid cystine to build up in every cell of a person’s body over time.
Fera’s diagnosis was devastating: cystinosis is degenerative and though it can be managed and treated with a tremendous amount of work, there is no cure.
Over the last three years, I’ve seen Fera and her parents struggle, but I’ve also seen her grow up, stabilize, and play with my daughter like any other child.
I wanted to speak to Vanessa and Sylvan about their experience, about their interactions with the health system and the cataclysm of Fera’s diagnosis. My intuition was that many people – including me – would benefit from hearing their story, and after recording our conversation I’m more convinced of that than ever.
In addition to being Fera’s parents, Vanessa Bonneau is a writer and editor, and Sylvan Lanken is a musician who also works in higher education.
The following interview isn’t easy to listen to at times and it deals with very difficult themes. So please be warned. But I do encourage you to listen if you can – Vanessa and Sylvan brought all of their humanity and openness to this interview, and as a result it is a gift.
-Cystinosis Research Foundation
-Basic information on cystinosis (NIH)
Recorded June 29th, 2023
Art: Jeff Landman
Music: Mr. Smith