Mum Takes Touching Photos of Children With Rare Genetic Diseases

A photographer mum has decided to photograph children with rare genetic diseases to educate people about rare diseases.

For someone whose family have been living with pain since her brother died of Tay-Sachs disease, a rare neurological genetic condition with no known cure, Karen Haberberg knows the challenges rare diseases bring to a family so she decided to help ease the pain of other families through photographs.

She then realised that families could use a place to share their stories and hear others especially as she has relived the hardship as she watched her best friend struggle to find a diagnosis for her son. Karen told Popsugar:

“Finding a proper diagnosis can be incredibly challenging and frustrating for families, and without a correct diagnosis, these children are not properly treated, which stifles their progress.”

“Families often feel incredibly isolated when they find out their child has a rare genetic disease and they want their children to experience life to the fullest every day “” even when death may be imminent.”

So, with her skills as a photographer, she started a photo campaign, Project Believe, in order to raise awareness for rare diseases while also hoping to change the lives of others suffering. In her Kickstarter page, Karen describes her campaign as “Life affirming photos of extraordinary children contending with rare genetic conditions and finding joy and beauty in daily life.”

She has been taking photos of children with chronic illnesses that also show the never-ending support of their families.

“The chronic illness of a child requires a commitment that is with the family every moment of every day. It steals precious time as families battle insurance companies, search for solace, and struggle to manage everyday tasks,” Karen said.

Karen also aims to create a book of portraits that will serve as an educational resource, which would include a brief medical explanation of each disease.

At least 30 families were featured in the book. where they share their stories in their own voice. Karen said that she is privileged to know these families and to be allowed into their world for a short time to photograph their situation. She was able to see how the families cope with such an illness that can also provide moments of profound dignity, grace, transcendence, and joy.

“This project will provide a record of such moments, illuminating what it means to be a family . . . no matter how brief your time on earth,” she shared.

Source: Popsugar.com