Sophie-Shifra Gold
[EDITOR’S NOTE: Sophie-Shifra Gold wrote this article with editing from Rabbi Jason Levine a Reform rabbi at Temple Beth Am in Seattle, WA for the recent Yom Kippur healing services at Temple Beth Am. She shares her experience dealing with Canavan disease, a genetic disorder that occurs to 1 in 40 Jewish people.]
Temple Beth Am Yom Kippur Healing Service
2015 / 5776
On September 24, 2013, Michael Levin and I welcomed a beautiful bundle of joy. We took our time naming him. His beautiful name was Isaac Michael Levin. He was welcomed into the Jewish community during his bris milah at 8 days old at home in Seattle, WA. The event was such a beautiful moment in our lives. Little we had known that he was born terminally ill with Canavan disease.
We saw signs that appeared that Isaac wasn’t meeting the typical milestones. He had a bad reflux issue, couldn’t support his neck, couldn’t crawl, couldn’t roll, couldn’t walk, and wasn’t talking with typical baby sounds. He was about three months old when his baby pediatrician originally thought he was autistic. About a month later, his pediatrician said he had a very low muscle tone. The formal medical diagnosis was hypotonia. I immediately set up Isaac for physical/occupational therapy while waiting for results from his blood/urine lab work.
Finally, the results came in positive that his NAA levels were abnormal. That’s the first sign towards the diagnosis of Canavan disease. The day of his diagnosis was the most devastating for all of us. It was on April 29, 2014. I kept thinking when will this become more clear? Eventually, Isaac had his first MRI when he was about 8 months old on May 23, 2014. The results showed images of his typical Canavan brain with the diminishing myelin sheath. We were told initially that Isaac will only live for 2 to 3 years. We were very heartbroken. I decided to take the matter in my own hands out of LOVE for Isaac.
After that diagnosis day, I assertively made contacts to local Canavan families, and out of state. I contacted Canavan Foundation of New York, Canavan Research Illinois, United Leukodystrophy Foundation in Dekalb, Illinois, and National Tay Sachs and Allied Diseases to get current medical information on Canavan disease. It turned out that the medical information on Canavan disease was outdated. After I heard personal stories and firsthand experiences from other parents with CD children, I realized I had to do more for our precious Isaac out of love!
So his daddy Michael and I brought Isaac to our first Canavan Research Illinois fundraiser event on October 25, 2014. That weekend was so spiritual, beautiful, heartfelt, and emotional. For example, our precious Isaac made a special bond with an older Canavan teenager, Maxwell Randell, and other Canavan children. It was amazing to see how Isaac and Maxwell communicated in their beautiful ways.
After that trip, Isaac eventually demonstrated difficulties in eating his food by mouth independently. A very difficult decision was made to help his eating abilities. Isaac needed a NG tube which was done through the nose. That procedure was done on January 16, 2015. That was a very difficult experience to go through for Isaac. That lasted about a month and half.
On March 4, 2015 Isaac went to Seattle Children’s Hospital because he experienced his first long seizure. That status epilepticus seizure lasted for a hour and half long. He was also hospitalized for the nasty RSV virus that kept him in the ICU unit twice due to his breathing complications. He had stridor. He cried nonstop during the whole time at the hospital. The medical team did their best to support our decisions for our precious Isaac.
At the very end, it was difficult for us to make the final decision for Isaac to go and join other Canavan Disease children who preceded him. He lived to the fullest of 18 months old. He passed away on April 10, 2015. We all loved him so much. To this day, we will always remember him as a true warrior of the cruel Canavan disease. I will continue to fight in Isaac’s memory.
I would like to mention that Seattle hosted their first genetic screening awareness event back in November 2014. The event was hosted by University of Washington Hillel and Progenity based in Michigan. About 90 people signed up for the event to get their blood taken for any genetic disorders. Many thanked me for sharing my story about Isaac before the event. My story was in the former Seattle Jewish Transcript News, Wall Street Journal, and coming up in October in a local magazine. I am in hopes that there will be another genetic screening event here in Seattle this coming fall.
We all eventually found our exact genetic mutation of Canavan Disease. It is the E285A. Isaac Michael Levin had double genetic mutations of Canavan Disease, passed from his parents, I and his father Michael Levin. My mother Wendy Marcus, my sister Shira Smason-Marcus, Michael’s mother Myrna Levin, Michael’s youngest sister Michelle Levin-Sternberg are genetic carriers of Canavan disease. There are four common genetic mutations of Canavan disease: E285A, A305E, Tyr231X, and 433-2, out of over 80 novel mutations out there.
To formally get screened for any genetic disorders in the family, please ask your OB-GYN for the full Ashkenazi Jewish genetic diseases panel before planning a family. The full Ashkenazi Jewish genetic disease panel involves about 19 current Jewish genetic diseases known in the Ashkenazi Jewish population. This affects both the Jewish and non-Jewish populations. Please continue to spread awareness about my story, the importance of genetic screening, and Canavan disease.
More than sharing my Raising Isaac with Love story from the CRI fundraiser ball event and information about genetic screening awareness, I wanted to share one of my Facebook posts about grief:
“Today’s a new day. Grief can be raw yet felt so tenderly within my own heart. I am glad I’m willing to share my grief during my healing journey. Who says it’s easy? No one can tell us to stop crying, grieving, or forgetting. It’s about taking baby steps in the healing journey. Once one experiences a personal devastating loss beyond belief, others can just be there, be supportive, be understanding, be loving, be kind, and be thoughtful. Grief comes through the veins, arteries, chambers, and the whole area of the heart. Sometimes it’s impossible to handle it all at once. It can become a ripple effect for the whole soul, body, and mind. Sometimes it feels like a huge wave washing over you or me. Sometimes it feels like a small wave washing over you or me. Some have told me that grief will diminish with time, healing, and love. It’s actually how one perceives grief and welcomes it to become visible to others. It’s ok to share/talk about it to others. Lastly, the soul of the human body has to be taken care of everyday with good sleep, good food, good energy, and positive vibes. My soul will be healed with time, faith, love, tenderness, and kindness. Thank you for being part of my open healing journey.”
I hope my story has helped you all remember those special moments with our special loved ones and children that preceded us, and inspires you to continue fighting for genetic screening and awareness. I thank you for your support and love in this beautiful healing journey. Thank you for listening to my story.
Video: www.youtube.com/watch?v=dzRdez-6_C0&app=desktop
Source: Sophie-Shifra Gold
