Great Miracles Story: Yeshuahs Hashem K’eref Ayin
JUMP Miracles
Great Miracles Story: Yeshuahs Hashem K’eref Ayin
Amazing never-told story by Amy (Chana Rochel) in her own words
When I was around 18 months old, I started to slow down on developmental milestones. When I was old enough for school, my parents sent me to The Cerebral Palsy Center, because back then, if the doctors didn’t know what you had it went under the category of Cerebral Palsy. I was there for several years with other physically disabled (some severely) children.
When I was nine years old, I became the first physically disabled child, quadriplegic and in a wheelchair with braces on my legs, to be mainstreamed into a fourth-grade class. It was not an easy time, emotionally or physically.
At 14, I became part of an experimental program at NYU/Cornell in NYC and was given a trial of Laradopa. Laradopa is a medication used to treat Parkinson’s patients. We were told by my treating physician, Dr. Madylyn Olson, that I probably wouldn’t walk, but at least I’d be able to feed myself, turn pages in a book, and dress myself, something I had never been able to do before. I was diagnosed with Juvenile Parkinson’s because my symptoms were similar.
Three months later, on November 24, 1972, I took my first steps. My first miracle: As a quadriplegic, I never expected to just get up and be able to take any steps on my own, but I did! I was 14 years old and had been taking Levodopa for approximately three months. My mom had sat me down at the table while she started to prepare the family dinner. It was 4:30 p.m. on a weekday and Mom wanted dinner on the table by 5 p.m. “Ma, I want some ice cream,” I said. Her reply in the negative should have been obvious to me since she was prepping dinner. “No, it’s too close to dinner,” she said. I asked again and the response was the same. My mother’s back was toward me as she took the dinner plates out of the cabinet and washed veggies in the sink. Being 14 I did not want to hear no as an answer to my request and I just thought to myself, “Well then I’ll just get it myself.” Without a second thought, I wanted that ice cream so much, for the first time in my life, I took three or four steps from where I was sitting to the refrigerator door. Shocked at what I had done I held tightly to the door so I wouldn’t fall. I yelled, “Mom, Mom, turn around!” “What do you want?” she asked as she turned with the dinner plates in her hands. She took one look at me standing there, for the first time, and in shock, dropped the plates and ran to me crying over joy of seeing her quadriplegic daughter walking for the first time!
When I was 17 years old, before I started college I decided to inquire whether or not someone taking Laradopa can have children. One doctor I had reached out to told me that I should never have children.
Throughout college at Hofstra University, I still needed to use the wheelchair on occasion, usually when the weather changed suddenly, I was getting ill, or I was tired. I met my husband David at the beginning of my freshman year. We had both just turned 18, even though he was a year ahead of me. When David asked me out, I had a conversation with him where I told him that I had trouble walking and that a couple of doctors had told me that I should never have children. If he couldn’t handle that then we were not going to date. He didn’t care. We grew up together. We lived through and supported each other through many of life’s challenges. And at 27 we got married.
When I turned 30, my neurologist couldn’t see me anymore as she was a pediatric neurologist and I needed an adult neurologist. The problem was finding one who specialized in movement disorders and, at that point in time, there weren’t many around. I ended up at a consultation with the head of the movement disorders clinic at Columbia Presbyterian who didn’t care for my asking him questions, so I left. And miraculously walked out of his office to the man who would change my life, research neurologist, Dr. Toby Nygaard, who was doing research on Segawa’s Dystonia, also called Dopa Responsive Dystonia, with which I was finally diagnosed. Dr. Nygaard convinced me to change my medication from Laradopa to Sinemet, which is a combination of Levodopa and Carvodopa that gets across the blood brain barrier more evenly than Levadopa alone, thereby limiting the spikes of my days of not walking. Suddenly my days were much more like a normal person. Miracle number two.
Dr. Nygaard also introduced me to my neurologist of many years, Dr. Susan Bressman. Dr. Bressman also changed our lives when she told us that there was no reason from a neurological standpoint that I couldn’t have a child. Unfortunately, my body disagreed and we discovered that I suffered from endometriosis, a painful disorder that can cause infertility. After treatments and surgery (and laying on my mom’s couch on my left side for three months due to preterm labor) Max joined our family. Another miracle.
In 2019, right after Max’s college graduation, we found out that David suffered from autoimmune hepatitis (only 25% of people with AIH are male). We searched for a knowledgeable hepatologist, and thanks to Dr. Bressman found Dr. Ira Jacobson at NYU who has been treating David for a number of years. Until last July, David had been relatively stable and doing all of the things he loved, woodworking, hiking, reading, etc. His numbers had changed, but not in a good way, and we were referred to the transplant team where we learned about Living Donors and have been searching for an altruistic donor ever since then. David is exhausted most of the time and spends hours napping. He can’t go hiking anymore or do any of the things he loves. Even being with our family is a risk for David because he is on immune suppressants and can’t chance getting sick. So. I’m looking for another miracle—that someone will come forward and donate part of their liver to him to save his life! We have been told liver regenerates and is the only organ in the body that does. One will grow back their full liver in a few months. If you would like to help save my husband’s life, do one of the greatest mitzvahs one can do in their lifetime. For more information, please contact Chaya Lipschutz, an organ donor and liver and kidney matchmaker at [email protected]. Her website is LiverMitzvah.com. Rabbi Ephraim Simon, who is a liver and kidney organ donor, says about his liver and kidney donation, “There is no greater feeling than knowing you brought life to another human being. It has truly been an amazing experience that ranks right up there with the birth of my nine children. If I could, I would do it again tomorrow.”


