On September 24, 2013, Michael Levin and I welcomed a beautiful bundle of joy. We took our time naming him, eventually choosing Isaac Michael. He was welcomed into the Seattle Jewish community at his bris milah eight days later. The event was such a beautiful moment in our lives.
Little did we know that Isaac was born terminally ill with Canavan disease. As time went on, we saw signs 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, and wasn’t making baby sounds. He was about three months old when his pediatrician suggested that he was autistic. Then one month later, the pediatrician said he had a very low muscle tone. I set Isaac up with physical/occupational therapy while waiting for the lab results. Finally, the results came in positive that his brain’s N-acetyl aspartate levels were abnormal. Isaac was also tested for the four common genetic mutations of Canavan Disease, including E285A. Michael, our parents, and siblings were tested. It turns out Michael and I were genetic carriers of E285A, which we had passed on to our precious Isaac.
Isaac had his first MRI when he was eight months old. The results showed images of the typical Canavan brain with the diminishing myelin sheath. We were told that Isaac would live only two to three years. We were heartbroken.
To best describe Canavan disease, it is a recessive, white matter leukodystrophy, where the brain’s myelin sheath diminishes over time. It causes other symptoms, such as very low muscle tone and the inability to walk, move fully, swallow and eat properly, and communicate effectively.
Typically, Canavan babies and children have a shorter life expectancy and don’t live past 20 years old. There are rare cases where Canavan babies and children do live to their middle 20s and early 30s. Ultimately, there is no cure for Canavan disease. Charity organizations are raising money and awareness to fight the disease, and medical researchers are working on gene therapy clinical trials in hopes of finding a cure.
Out of love for Isaac, I decided to take matters into my own hands. I assertively made contacts to Canavan families locally and out of state. I contacted the Canavan Foundation of New York, Canavan Research Illinois, United Leukodystrophy Foundation in Illinois, and National Tay Sachs and Allied Diseases to get current medical information, since much of what was online was outdated. After I heard personal stories from other parents with Canavan babies and children, I realized I had to do more for our precious Isaac. So his daddy and I brought him to our first Canavan Research Illinois fundraiser event on October 25, 2014. That weekend was so beautiful, moving, and emotional. Isaac made a special spiritual bond with a Canavan teenager, Maxwell Randell, other Canavan children, and teens. It was amazing to see how Isaac and Maxwell communicated in their beautiful ways.
After that trip, Isaac started showing difficulties eating, and in January 2015, he was given an NG tube for feeding. That lasted for almost two months, before he went into Seattle Children’s Hospital on March 4 for a status epileptic seizure that lasted an hour and a half. He was also hospitalized for the nasty viral infection that kept him in the ICU twice due to his breathing complications, and he had stridor. The whole time we were at the hospital, he cried constantly. The medical team did its best to support our decisions for our baby.
Eventually, it was time for Isaac to join other Canavan babies and children who preceded him. He passed away on April 10, 2015, just 18 months old. We all loved him so much. We will always remember him as a true warrior against the cruel Canavan disease. I will continue my fight in Isaac’s memory. I thank everyone for support and love on this healing journey.