L ike Down syndrome, Prader-Willi syndrome (PWS) is a non-hereditary genetic disorder that results from a chromosomal abnormality.

Unlike Down syndrome, which affects one in 700 babies, PWS is rare, affecting only one in 15,000 babies.

My daughter Ruchama is that one in 15,000.

My wife, Chana Ella, was trained in special ed and worked in that field, so she had plenty of exposure to the special-needs population. I, on the other hand, knew nothing about children with special needs, and I certainly didn’t expect to have one. My main concern, leading up to Ruchama’s birth, was how we’d manage with another child. We had been married only four years at that point, and we already had two children, a son who was not yet three and a daughter who was just a year and a half. So I approached the birth with considerable trepidation.

Ruchama seemed perfectly normal at birth, scoring well on the Apgar test. But while Chana Ella and I were busy calling our relatives with the good news and accepting their mazel tov wishes, a nurse came in and gently informed us that our baby been placed in the special care unit because she had hypotonia, or low muscle tone. She couldn’t suck, and her cry was weak, almost like a broken tape trying to play.

From Paul Kimball Hospital in Lakewood, New Jersey, Ruchama was transferred to the Children’s Hospital of Philadelphia (CHOP) for testing. “I hope they don’t find anything wrong with her,” Chana Ella and I kept telling each other. In our naïveté, we thought that as long as there was no diagnosis, our baby would be okay, even if she was floppy as a rag doll.

When Ruchama was ten days old, genetic testing revealed that she had Prader-Willi syndrome. Until that point, I was in a daze, not quite knowing what to make of all the tumult surrounding Ruchama. Once I heard the diagnosis, I thought my life would fall apart.

I had never heard of PWS, but when the doctors described its symptoms, I felt faint. Prader-Willi syndrome, I learned, causes intellectual impairment and motor deficiencies, as well as issues with endocrinology, the eyes, the respiratory system, and behavior. In infants, symptoms include low muscle tone, difficulty feeding, and slow development. Later in childhood, a person with PWS becomes constantly hungry, because the brain never gets the message that the person is full.

I drove from CHOP to Brooklyn, to share the grim news with my parents, and on my way, I stopped at the home of my rebbi.

After explaining to my rebbi what PWS is, I told him that five percent of people with PWS are completely normal, while five percent are devastatingly retarded. The other 90 percent are somewhere in between.

“Five percent is a huge number,” he reflected. “Think about it: What are the chances of you, Yisroel Meir Broyde, being born a Jew? Jews are a tiny fraction of the world’s population. Once you’re born a Jew, what are the chances that you’d be born into a frum family? Even then, what are the chances that you’d attend yeshivah and become a ben Torah?

“You’ve beaten the odds in your life already just by virtue of your being Jewish, frum, and a ben Torah,” he concluded. “So don’t belittle your daughter’s five percent chance at a normal life.” (Excerpted from Mishpacha, Issue 694)