Girl Born with Rare Fragile Bone Disorder Learns to Walk
July 11, 2021 – Thanks to doctors in the Pediatric Orthopedics Unit at Rambam Health Care Campus, a young girl diagnosed with a disorder that causes her bones to break easily recently took her very first steps.
Adele Ben Haim, a five-year-old girl born with a rare genetic disorder that causes her bones to be very fragile, recently walked and danced at her kindergarten graduation party. For Adele, this was an inconceivable accomplishment only a few months previously – she had only learned to walk three months ago! Within that short period of time, she took the first steps in her life, after living in a world where any fall could lead to limb fractures and long months of recovery.
“Every time she breaks something in her body it’s like going back in time for us,” says Hila, Adele’s mother. Since she was born, Adele has dealt with dozens of fractures in her legs and femurs, which have multiplied despite doctors’ attempts to treat her. “I always cry when it happens. It hurts me to see her like this, but we have gotten used to it. I was told that when she would start to walk, I have to start worrying, and it’s true,” Hila added.
Immediately after her birth, Adele’s parents realized that something was wrong – she was born with a broken leg. She underwent surgery to repair the fracture in a hospital in the north, but the treatment was unsuccessful and her parents came to Rambam Health Care Campus when Adele was a year-and-a-half. There, Professor Mark Eidelman, Director of the Pediatric Orthopedics Unit in Ruth Rappaport Children’s Hospital diagnosed the disorder from which she was suffering. “When she first came to me we took X-rays. I was shocked, because I saw so many fractures in her femurs,” recalls Professor Eidelman. “It was a rare case. The more we wanted to continue with reconstruction, the more we broke the bones.”
According to him, aside from the genetic disorder, Adele is also dealing with other orthopedic issues, and has suffered from more than 20 fractures so far. Under the direction of Professor Eidelman, she has undergone several corrective surgeries at Rambam, including having her legs straightened and having casts put on. “Actually her bones are hollow,” Hila explains. “The last time she broke a bone, it was in kindergarten when she was with her physiotherapist. We do everything we can and keep an eye on her.”
In addition to the medical care received at Rambam, once every six months, Adele receives a complex bone strengthening treatment at Alyn Hospital in Jerusalem. “She asks, ‘Why do I have to get treatments and my sisters don’t?’ It hurts her every time she undergoes a painful treatment or falls and breaks a bone, but we have grown accustomed to it. There is nothing else,” says her mother. However, she clarifies that the family members who wrap Adele in love and support have not lost hope that she will be able to cope with the challenges life has placed before her.
“You protect her and accompany her everywhere. There’s nothing else; it’s not simple but you get used to it, like anything else. If we did not believe in God it would be harder for me to cope, but Adele gives me strength. She does a lot of things that most doctors told me she would not be able to do. And, she’s progressing. Adele shows everyone that she’s above everything. Seeing her walk like this is very moving and exciting.”
Adds Professor Eidelman, “Eventually, she will be fine, and I will come to her wedding someday in the future.”
In the photo: Adele in the Meri and Sol J. Barer Play Atrium in Ruth Rappaport Children’s Hospital.
Photography courtesy of Rambam Health Care Campus.