A young woman’s journey as a BRCA gene carrier
by Daniela Mendelsohn
This year my business partner and I founded a production company that creates short documentary films commissioned by families and individuals. Being a documentary filmmaker has given me the opportunity to meet so many incredible people and hear their inspiring stories. Among the numerous stories that I have been fortunate enough to document, one in particular hit close to home: the film about my younger sister, Liora, and her courageous journey as a BRCA gene carrier.
Ten years ago my mother insisted that our family get tested for the BRCA gene—a gene linked to breast and ovarian cancer. Her family has a strong history of breast cancer, and she was convinced she was a carrier. According to protocol, my mom and dad were tested first, and you can imagine our surprise when it turned out that she tested negative and my father tested positive.
My father’s mother, Zena, died at age 39 from late-stage breast cancer after being misdiagnosed. Although she was never tested, we assume she was a BRCA gene carrier and had passed the gene down to my father. Growing up, we knew very little about my grandmother. My father seldom spoke of her, perhaps because he found it to be too painful. He was only 13 years old when she passed, and I believe his way of coping with that loss was to shut down. I often found myself wanting to ask him questions about her but I hesitated because I knew it was a sensitive topic. And now here we were, more than 50 years later, finally starting to have that conversation because of a genetic test.
Liora and I went together to get tested and waited for what felt like forever for the results to come in. Being a protective older sister, I hoped and prayed that if one of us were to have the gene, it would be me. And then the call finally came—I was negative, and Liora was positive. I was angry and sad, but I also knew that I had to be strong for my sister. And so I stood by as Liora’s journey began.
Liora underwent intensive screenings every six months. They took no risks because she had more than an 80 percent chance of being diagnosed with breast cancer. Every visit to the doctor was clouded by fear and anxiety, not knowing what the outcome would be. This was not how she envisioned her life: she was 23 years old, had just finished her master’s degree, was about to marry the love of her life, and was looking toward the future and building a family.
For a few years, the scans came out clear, and Liora was issued a clean bill of health, but then things began to change. The doctors started to notice some unusual spots and performed numerous biopsies. By now she had a little baby girl who was the joy of her life, and she couldn’t imagine not having the chance to see her grow up. And her thoughts went to our grandmother Zena, who was robbed of that opportunity, leaving four little boys behind.
This gene was a chain that linked Zena, my father, and Liora. Although my father was consumed by guilt for being the one who passed down the gene, Liora felt gratitude for having this information because she now had the opportunity that my grandmother never had to do something. She told me, “I remember saying to Dad that this is a good thing. I had information so that hopefully I will be able to be there to see my kids grow. I had opportunities that his mom did not have. Her story ended tragically, and we were going to change that ending.”
I was overwhelmed by Liora’s strength, courage, and fierce determination to do whatever it took, no matter how painful and challenging it would be, to ensure that she would be around to see her children grow up and hopefully someday meet her grandchildren. Liora was determined to live her life not just for herself or her kids but for our grandmother too. And so at the age of 29, Liora decided to undergo a prophylactic double mastectomy. And although this was a long and hard road, it gave her the opportunity to reflect, reconnect, and explore her own history.
For a period of time, Liora maintained a level of privacy, wanting to focus on healing and looking ahead. That changed this year when she felt ready to document her story. Her original intent for the film we made was to have a record of her journey to one day show her three children (one of whom is named for Zena).
“I want my kids to know that there are a lot of things in life you can’t control,” she says. “But this was a decision I could make, and I want them to see it one day and say, ‘Wow, you can really do things to make an impact in your life.’ They will hear about their great-grandmother, they will hear about my story, and they will hear about my father’s journey.”
We decided to share Liora’s film online hoping it might provide comfort and strength to others facing a similar journey in life, and the response has far surpassed any expectation. Women from all over the world have reached out to Liora, sharing their story and seeking her guidance and support. When I asked Liora how she felt about putting her story out there, she said, “The stories that are being shared with me are humbling and inspiring. It has made me realize the importance of sharing and ‘paying it forward’ at this stage of my life.”
Although Liora never had the chance to meet our grandmother Zena, this experience of learning about our family health and history has connected them in a profound and meaningful way. And although Zena never had the chance to meet her grandchildren, Liora’s journey has brought her out of the shadows and into our lives, allowing us to feel connected to and inspired by her.
View Liora’s film, From Fear to Freedom, below or at docyourstory.com/portfolio_page/liora/.
docyourstory is a boutique production company specializing in personalized documentary films that capture stories. Our films are commissioned by families and individuals who are looking to document their story or the story of a loved one. Our passion and talent lie in capturing our featured stars in their element, highlighting their personalities, and bringing their stories to life.
docyourstory Founders: Keren Greenberg and Daniela Mendelsohn
Having studied photography and video in New York City and abroad, Keren has mastered the art of storytelling through capturing unique and spontaneous moments on film. Keren has spent much of her career documenting the stories of all four of her grandparents through writing, film, and photography. Daniela started her career in the nonprofit sector providing art and music programs for pediatric patients. Her inspiration is her 101-year-old grandmother whose life she is grateful to have captured on film. Combining their strengths and very different skills, Keren and Daniela have embarked on a very joyous journey documenting the life stories of people all over the world.