Mother Turns Sadness Into Advocacy

The Singer family

Dylan Singer’s room looks just the way it was before he died.

Sesame Street posters adorn the walls, including one of Elmo with Dylan’s name printed next to him. A plush Barney character sits patiently on his neatly made bed.

Dylan Singer lived 19 years with familial dysautonomia (FD), an autonomic nervous system disorder. He was a big brother and a loving son, grandson and nephew.

And his story is one his mother, Cindy, hopes will live on for others.

Testing for FD was not available until Dylan was about 8 years old, Cindy Singer said.

“It was a sort of an odyssey getting to a diagnosis because nobody had even heard of the disease,” she said, noting she was a carrier of Tay-Sachs.

Born in November 1996 at 5 pounds, Dylan started exhibiting symptoms of FD early on, such as not swallowing or being able to control his body temperature. But without knowing what the disease was, it was difficult to understand what was happening.

After a few months where it seemed Dylan’s health was worsening and doctors brushed off her concerns as just those of a hysterical new mother, Singer was able to get Dylan admitted to Children’s Hospital of Philadelphia where he was, “through a stroke of God,” finally diagnosed with FD that February.

“I brought him home and from there — there’s no parenthood manual let alone a manual for taking care of a special needs kid,” she said, “and so I was probably close to having a nervous breakdown as you could get because first of all, it’s nobody’s part of the plan to have an unhealthy baby. It doesn’t enter your mind when you’re young and having children, you just assume you’re going to have a healthy baby. So if somebody told me I could have a do-over, I probably would have done it over.

“But then, I guess by May, I was out with him somewhere and he smiled at me and that was it, he was mine and I fell in love with him,” she recalled. “From that point on, I not only became his mom, but I became his advocate.”

Since he passed in April 2016, Singer is focused on ensuring his story lives on.

In spite of his illness, Dylan was a happy kid, Singer recalled, wiping away tears.

“As sick as he was, he laughed a lot,” she said. “He loved Blue’s Clues and Barney because they were developmental issues for him. But he would retch a lot and be very nauseated but once it passed, he was done. He had every reason to be angry or depressed but he wasn’t.”

He would sit on the couch with Singer or her father, Dylan’s Pop-Pop and “buddy,” and watch TV or play on the computer. Books he liked to read are still on a shelf in their living room.

He went to school at the Springtime School in Newtown, which is geared toward individuals with autism “because Dylan was nonverbal and he communicated with an iPad, but he had to be taught the same way one who was on the spectrum would be taught,” Singer explained.

And while people might have underestimated him or made wrong assumptions about Dylan’s intellect and ability to express emotions, he was bright, Singer said. She recalled with a laugh a time she was shopping for bathing suits and received a call that Dylan had told his Pop-Pop he loved him through his iPad, which made Singer cry — and caused a saleswoman to reassure her they would find her a bathing suit.

“It showed the depth of his feeling that people underestimated him,” she said.

His disease created a new normal for the Singer family. They learned to “divide and conquer” when it came to giving Dylan attention as well as spending time with their younger son, Brandon. Singer said he is an FD carrier.

“I had genetic testing done with my second child and if Brandon had come back affected, I would have terminated that pregnancy because I would never put another child through what Dylan had experienced through all of his 19 years,” she said. “However, I wouldn’t change what I had with him because he brought more joy than he brought pain. It changes your life.

“As sick as he was, it’s also how much life he had, too,” she continued. “He had as much life as he had illness.”

This past year was a bad one for Dylan. He fought pancreatitis and rebounded, but Singer noticed differences in him.

One day in April, “he wasn’t quite feeling himself, but I was not unused to that,” Singer said, eyes welling with tears. His blood pressure was up, which Singer said was also not unusual, but she couldn’t get it down despite giving him medication. When Dylan said he wanted to move from the couch to the floor, Singer said to her husband, “he’s going to have a seizure.”

He had been taken to the hospital for seizures before, so this was not out of the ordinary, but Singer remembered thinking there was something different about this one.

He was airlifted to CHOP after seizing for six hours without stopping “and by the 12th hour of trying everything they could to calm him down, they had to put him on pentobarbital, which is basically general anesthesia to stop him, and that was the only thing that would stop his seizures.”

“I knew there was severe brain damage there. And I knew then that he wasn’t going to be the same that we had,” she said.

After placing Dylan in a medically induced coma for several days, the Singers made the difficult decision to take their son off of life support and allow him a peaceful end. His quality of life was their priority, Singer said, and she and her husband did not want Dylan to live being unable to roam in their home as he had or have to constantly go back and forth to the hospital.

He was buried in his airplane pajamas, chosen by Brandon so he would fly to heaven, and surrounded by his favorite figurines.

His life inspired Singer to start doing speaking engagements for the past few years with Dr. Adele Schneider from the Einstein Victor Center for the Prevention of Jewish Genetic Diseases, where a fund was also created in Dylan’s honor. The Dylan Singer Educational Fund at the Victor Center has close to $20,000 from the community earmarked for educating the community.

“I want people to know that his life has meaning,” she said. “And that first and foremost he was our child, grandchild, brother, but he was also this involuntary hero who had no idea what his impact could mean to others. And that through his life and his struggles and his death, hopefully, we’re going to prevent this broad community who still tells me they never even heard of this disease that they need to be screened.”

She works with Rabbi Larry Sernovitz — who was an associate rabbi at Old York Road Temple-Beth Am, which Singer attended, before he moved to Temple Emanuel in Cherry Hill and whose son also has FD — to create awareness, especially in the rabbinic community.

Sernovitz will also lead Brandon’s Bar Mitzvah in March. His mitzvah project focuses on creating awareness about Jewish genetic diseases.

Singer hopes Dylan’s story appeals to both Jews and non-Jews, as it is not only Jews who can be affected by genetic diseases and need to be screened, she said.

A makeup artist for her own company, Dylan Michael Cosmetics, “I do a lot of weddings and I don’t let a Jewish bride sit in my chair without sharing Dylan’s story and without telling them that they should be screened. And I’m very blunt. Like, ‘This is a no brainer; you have to be screened.’”

“I would want people to know we were a happy family in spite of this,” she said, adding she owes her husband for his support for her speaking and advocacy, and her parents for letting them move in with them to support Dylan. “I wouldn’t want people to have this image that we were always crying. We really weren’t. You learn to adapt and make the new normal.

“The thing that makes me the most sad is I don’t want people to forget him. I want people to know that I had this amazing child and, for whatever reason, he was given to me, and I want people to know that he may have only lived to be 19, but his life in some way will impact the future of other people’s lives.”

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