Omer and Shoham Schwarzfuchs, both 29, grew up in large loving families with fairly typical life trajectories.
Omer, from Beersheba, is one of 10 children. His mother works in computers and his father heads the Emergency Room at Soroka-University Medical Center in the city. Shoham grew up with six siblings in Alon Shvut, Gush Etzion. Her mother is a Hebrew literature researcher and lecturer, and her father – a third-generation Jerusalemite – is a rabbi and Talmud teacher.
Completing high school, both did their mandatory military service; Omer in the Nahal Combat Unit and Shoham in the Education Unit.
A friend introduced them, and six months later, after Omer finished his IDF service and escaped unscathed from the 2014 Gaza War, they were married.
Omer was accepted to medical school at the Ben-Gurion University of the Negev. Shoham was studying Hebrew and Jewish philosophy at the same university.
“When we found out that I was pregnant, we were ecstatic,” says Shoham. “All throughout the pregnancy we did the required tests, and everything was fine.”
Their first daughter, Eden, was born premature, in the 33rd week. “The doctors told us that this was fine and that she would be OK,” explains Omer. “She weighed a bit over 1.7 kilos and was in the neonatal intensive care unit for two weeks before she was sent home.”
Like most new parents, the Schwarzfuchses worried when Eden couldn’t breastfeed, when she couldn’t pick her head up, even a little, and when she cried incessantly.
“We thought it was because she was born premature, and every time we took her to be checked we heard the same mantra, don’t worry, she’ll be fine,” they explain.
“Eden fell between the cracks at the beginning, as there is only follow-up for premature babies until 32 weeks or if the baby is under 1.7 kg. Eden was born in the 33rd week and weighed 1.715 kg.,” says Omer with a sigh.
“In those first few months, everyone told us that we were just anxious parents, and that Eden just needed to develop at her own pace,” continues Shoham.
However, Eden did not continue to develop at any pace. By the time she was four months old, the young couple fought with their health medical organization to have her more closely supervised. They felt strongly that something was wrong.
THIS BEGAN an endless marathon of tests, doctor appointments, specialists and physical therapy that consumed all of their time. Omer delayed going to medical school. Shoham changed her major to speech therapy and started anew at Achva Academic College.
“Eden’s reflexes were slow, she had muscular hypotonia and there were no signs of her speaking. By nine months, everyone was still saying that she was OK. They told us not to worry, that by the time she was two, she would close all of the gaps,” they remember.
“I was filled with guilt,” recalls Shoham with pain. “I thought because I was working so hard as a counselor at a Pre-Army Preparatory Program (Mechina) while I was pregnant, I had caused Eden’s premature birth and that this was the cause of her delayed development.”
“People would look at Eden and ask us why she couldn’t walk yet or talk, or why her facial expressions were so strange,” says Omer. “They did not mean to be cruel, but it was so hurtful that Shoham avoided taking Eden to the park.”
“I’ll never forget when Eden was two, a mother said to me in the park, ‘How old is your daughter, eight months?’, and I felt so helpless to answer it made me cry,” shares Shoham.
The couple took Eden for genetic testing, but once again the results were fine. By the time she was two years old, the developmental gap was so big they just knew that it couldn’t be bridged. “We were desperate and knew that we needed to do something.”
They were finally able to get the necessary permissions to do a special genetic test in Germany called WES - Whole Exome Sequencing. It took three months to get the results; Eden had a very rare genetic mutation, MED13L haploinsufficiency syndrome caused by changes in the MED13L gene. Omer explains that Eden was the second out of only six people in Israel to be diagnosed with this mutation and to date only 250 people in the world have it.
“We breathed such a sigh of relief that we finally knew the cause of Eden’s developmental and cognitive difficulties,” says Shoham. “It gave us the strength to finally understand what Eden was going through and the ability to explain it to others.
“On the flip side, we also knew that she would never be like all of the other kids.”
The diagnosis changed Omer and Shoham’s outlook. They stopped the race to get Eden to normative milestones and are now focused on what they need to do so that she can be the best that she can be.
“We are learning to give her the tools to manage everyday life,” they say.
Now three-and-a-half years old, Eden can walk, but it took over two years of intensive work to get her there. At one point, Shoham took her twice a week from Beersheba to Bnei Brak to see a pediatric physical therapist to help her.
Eden doesn’t run or jump. She tries to speak but it is difficult for her. Some of the symptoms of this mutation are cognitive challenges, speech difficulties and motor difficulties. Medical experts concur that there is no cure or specific treatment.
“Many people think that the meaning of a child with special needs is autism but the definition is so much broader. Eden loves to communicate and connect with others, she just does it in her own way,” said her parents.
THE CONSTANT questions and sometimes insensitive remarks from both other kids and parents led the Schwarzfuchses to write a children’s book to explain Eden’s mutation.
Despite Omer’s heavy schedule as a third-year medical student, and Shoham’s last year of college, during the coronavirus pandemic they wrote Eden’s Beads in Hebrew.
The story is of a sweet girl who was born with a special bead (gene), which makes her different from all of the other children. In clear and simple rhyming language it explains genetic mutations and helps children understand other kids who have special challenges.
“The book is about love,” they say. “Love for Eden, love for other children with special needs and love for caring and understanding. Instead of letting society tell the story, we wanted to tell it.”
They were encouraged to write the book by the overwhelming support they received when they first shared their story on Facebook.
“We feel that this is a present to Eden,” they say with feeling. “To put it out there to the world to talk about special needs children and not to avoid or hide this topic.”
After many months of writing and rewriting, and working with a wonderful illustrator, Shelly Erez, the book was born. There is a digital version and a hardcover version, published by Niv Books.
They posted again on Facebook, and sold 400 copies in the first week. To date, they have sold over 1,000 copies. They hope that it will be read by parents with their children, in nursery schools, kindergartens and elementary schools throughout Israel, and by paramedical professionals such as physical, occupational and speech therapists.
“Eden is a gift. She has taught us so much about ourselves,” they explain. “How to relate to and accept others, how to love and be loved. The need to hug and to share our emotions. Eden taught us this in the strongest way possible.”
“We all have challenges, some are just more visual than others,” says Omer.
Five months ago, the Schwarzfuchses gave birth to their second daughter, Daria. Although it was always in the back of their minds that she could also have the mutation, it would have been extremely rare – especially since the mutation is not passed from the parents to the child, it is a change that happens independently in the gene sequence.
“We are trying to create a balance in our family. Although Eden’s needs inform so many of our decisions, we are conscious of this and make sure that Daria gets the love and attention that she needs.”
The Schwarzfuchses have become very active in trying to bring about change within Israeli society. They are working with other parents of special-needs children to create more awareness, dialogue and acceptance of children who – through no fault of their own – are simply different.
The last page of the book drives this message home: “We are all different from each other… Our noses, our personalities and even our hair. And we need to act pleasantly toward one another. When one of us has special needs, we will hug and love him/her and always extend a helping hand.”
“This has all been so overwhelming and challenging,” says Omer.
“But it is the most incredible journey,” smiles Shoham.
For more information about Eden’s Beads (in Hebrew), click here.