Telling the child's story
![“Noah is a trainwreck on paper but he is so much more than that.” A mother’s high alert vigilance and advocacy for 14 years](https://i.ytimg.com/vi/7TOEHhm2WkE/sddefault.jpg)
“Noah is a trainwreck on paper but he is so much more than that.” A mother’s high alert vigilance and advocacy for 14 years
The mother of a 14-year-old boy with medical complexity talks about the frustrations that sometimes arise when working with new clinicians who make assumptions about what her son needs before consulting her.
1 / 7
![](https://i.ytimg.com/vi/7TOEHhm2WkE/hqdefault.jpg)
“Noah is a trainwreck on paper but he is so much more than that.” A mother’s high alert vigilance and advocacy for 14 years
![](https://i.ytimg.com/vi/I3tGt_2QR7E/hqdefault.jpg)
Andy, a diagnosis at birth. “I immediately asked, “what is wrong with my son?”
![](https://i.ytimg.com/vi/UWnKRznoseM/hqdefault.jpg)
Mom, Natalie, introduces the story of her now 23-year-old daughter Emma.
![](https://i.ytimg.com/vi/LfEfXbTABVk/hqdefault.jpg)
Julianna’s beginning: Charcot-Marie-Tooth disease
![](https://i.ytimg.com/vi/o8FrHwvhMQ8/hqdefault.jpg)
Telling our son’s story
![](https://i.ytimg.com/vi/6kw47QcF_HI/hqdefault.jpg)
A Canavan mom on learning the diagnosis and hearing that there was nothing to be done.
![](https://i.ytimg.com/vi/rbDg4eJ4BzY/hqdefault.jpg)