Parents' Brutally Honest Reaction to Hearing Their Son Has a Fatal Rare Disease Will Tear You Up
After losing a brother to Tay-Sachs disease before she was born, photographer Karen Haberberg knew that the conversation surrounding rare genetic diseases needed to be heard by a larger audience. And once her best friend's son was diagnosed with Angelman syndrome (a neurological disorder that's often confused with autism and cerebral palsy), she dove headfirst into her book, An Ordinary Day: Kids With Rare Genetic Conditions, which takes look at the ins and outs of raising a child who has a rare genetic disease.
The photographer got her project up and running with a Kickstarter, and to say it's eyeopening would be an understatement. Karen sheds light on different conditions that plague one in 10 children in the US — including Crohn's disease, Glass syndrome, and PACS1 syndrome — by capturing the everyday lives of 27 families who have kiddos who battle these diseases every single day.
And while Karen enjoyed getting to know the families she featured, she didn't always leave their homes with dry eyes. "It's been an honor and privilege to work with each of the families, but given the topic, there were some difficult moments emotionally during the interviewing process," Karen told POPSUGAR. "While we may have shed a few tears together, their honesty and my empathy was a beautiful thing. I only want the best for these kids, and I think the parents recognized that."
Karen shows just how heartbreaking raising a child with a rare disease can be through a video about James, a 7-year-old boy who suffers from Duchenne muscular dystrophy (a fatal genetic disorder characterized by muscle degeneration and weakness). The footage of the in-person interview with his parents gives a raw, emotional account of what it's like having a child with an incurable, degenerative illness — and it will make even the strongest person sob.
Karen explains that the whole point of the book is to raise awareness and spark conversation about diseases you don't learn about every day. "One of the goals of this project was designed to get the word out on a population that is often overlooked and sometimes even shunned from society," she explained. "People recognized the need for the book as an effort to raise awareness on a variety of genetic conditions, to help fund research for treatments, and to connect families with kids who have rare genetic conditions to each other and the world at large."
Scroll through to see stills from An Ordinary Day: Kids With Rare Genetic Conditions and watch the video featuring James's parents above.