Why This Mom Is on a Mission to Photograph Children With Rare Genetic Diseases
Karen Haberberg and her family have been living with unspeakable pain since her brother died of Tay-Sachs disease, a rare neurological genetic condition with no known cure, before she was born.
While the agony continues to haunt her family, she's relived the hardship as she watched her best friend struggle to find a diagnosis for her son. She quickly realized that families could use a place to share their stories and hear others. "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," Karen explained to POPSUGAR. "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."
Since then, Karen has combined her personal passion with her skills as a photographer to make this into a reality. With the start of her photo campaign, Project Believe, she is working to raise awareness for rare diseases while also hoping to change the lives of others suffering. According to her Kickstarter page, Karen describes her work as "Life affirming photos of extraordinary children contending with rare genetic conditions and finding joy and beauty in daily life."
For the powerful endeavor, Karen has been taking photos of children with chronic illnesses that also show the endless support of their families with the goal of creating a book of portraits that will serve as an educational resource. "The chronic illness of a child requires a commitment that is with the family every moment of every day," Karen explained. "It steals precious time as families battle insurance companies, search for solace, and struggle to manage everyday tasks."
Yet Karen understands that coping with such an illness can also provide moments of profound dignity, grace, transcendence, and joy, which she hopes to share with others. "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.
Along with providing 30 families with a place to share their stories in their own voice, the book will also include a brief medical explanation of each disease. "I can't put into words how much I admire these families. I am privileged to know these families and to be allowed into their world for a brief time to photograph their situation," Karen reflected. "The parents are working every minute of every day to do what is best for their child no matter what the diagnosis. The children are resilient, sweet, happy, loving, and fighting their condition with all they have in them."
For more information, check out the emotional video and profound portraits here.
Darus, 5 Years Old — Phelan-McDermid Syndrome
"Darus is in near constant motion, which makes teaching him anything quite challenging. He loves to put things in his mouth and seeks oral stimulation/input, which means he bites his caregivers and friends." — Abby Lagunoff
Madison, 3 Years Old — Neurodegeneration With Brain Iron Accumulation Disorder
"Madison has severe global developmental delays with slow motor and cognitive gains. She can not say one word, is not independently mobile, can not crawl, and has no protective reflexes. She suffers from seizures and a sleep disorder. In her mid to late teen, Madison will suffer from Dystonia, Dementia, Parkinsonism and loss of vision." — Jennifer Greene
Ian, 5 Years Old — Megalencephaly Capillary Malformation and Bilateral Perisylvian Polymicrogyria
"The special needs community and Facebook have been extremely helpful in connecting us to other families around the world. It's been extremely important to us to see how other people deal with MCM and the alternative medicine has been helpful to us but a huge reason why he is doing so well." — Shari Abercrombie
Louis, 15 Years Old — Ehlers-Danlos Syndrome
"When I found out I was slightly overwhelmed and I burst out into tears. When I was crying, the doctor said, 'Do you want some chocolate milk?' It's upsetting to thinking that now people are going to look at you and say, 'This kid's not normal' and they are going to try and give you stuff to make you feel better, but that's not what you need." — Louis
Wyatt, 5 Years Old — 22q Deletion
"There are 187 possible conditions associated with his syndrome, it is a wide spectrum and each child has their own range. He has had 8 surgeries, is non-verbal and is fed 100% through a g-tube and is blind in one eye. He also has 4 fingers on one hand." — Sally Biederman
Clara, 10 Years Old — Tuberous Sclerosis Complex
"We are fortunate to live in a place that tries to include kids with special needs so she is on a soccer team and has recently started taking dance lessons. She enjoys music and eventually I'd like to get her started on learning to play an instrument as she has an amazing ear for sound, tones." — Kathleen White
Mackenzie, 2 Years Old — Tay-Sachs Disease
"We keep her as healthy as we can and hope treatment comes along for her but these kids don't have this kind of time. We try and enjoy the good days, remember them, and don't take anything for granted." — Colleen Plick