Gili Ben Moshe comforts his infant son, Lavi.
Giving Lavi Life
For more information or to make a donation to the fund for Lavi Ben Moshe through the Rothschild-Tel Aviv Discount Bank in Netanya or Bank of America in New York, visit www.givinglavilife.com.
August 21, 2008
An Israeli couple with a desperately ill baby has turned to a Camden County medical center in their quest to give their child some hope for life.
Gili and Yulia Ben Moshe of Hadera traveled to Camden in late July in pursuit of an experimental treatment for their infant son, Lavi. He suffers from Canavan disease, a serious genetic disorder that frequently affects Ashkenazi Jews.
The couple is staying at the Ronald McDonald House of Southern New Jersey with their two older children — Gaya, six, and Yahli, four — as Lavi, who is now 13 weeks old, receives treatment at the Cell and Gene Therapy Center at the School of Osteopathic Medicine of the University of Medicine and Dentistry of New Jersey. The center is dedicated to the development of therapies for neurodegenerative disorders.
At the same time, the Ben Moshes have established a website: Giving Lavi Life. The site features photos of the infant, a diary of the family’s stay in New Jersey, information about Canavan disease, and an urgent appeal for donations. The couple is seeking to raise $250,000 to make it possible for their son to have experimental surgery in an attempt to ameliorate his disease.
“This whole matter doesn’t seem a private matter of Yulia and Gili Ben Moshe of Israel,” Gili Ben Moshe said during a recent phone interview. “Canavan — you could almost consider it a Jewish disease. One of every 70 Ashkenazi Jews is carrying this same mutation.”
Ben Moshe explained that the degenerative brain disease is caused by a defective gene that affects the production of a certain enzyme necessary for the breakdown of a brain molecule. This, in turn, affects the growth of the myelin sheath that protects the nerve fibers of the brain.
Resulting symptoms may include blindness, paralysis, seizures, mental retardation, abnormal muscle tone, and poor head control. There is no known cure for Canavan disease, and death often occurs before the age of four.
Genetic testing can show whether both parents are carriers of the defective gene, Ben Moshe acknowledged, and the couple did undergo such testing prior to Lavi’s birth. However, he would not discuss the matter except to say, “Actually, there is here a genetic failure — a failure in the genetic checkup we did.”
Lavi, who is visually and aurally impaired and often intensely restless, is currently receiving two medications at the Cell and Gene Therapy Center and is showing “significant” improvement — responding to sounds and focusing his eyesight, Ben Moshe said. The changes brought about in the baby after only a few weeks of treatment, he wrote in an e-mail, “…for us seems as a miracle.”
The medications, although FDA-approved, are not within the protocol of treatment for Canavan disease in Israel, he wrote. “Now,” he added, “it is important for me to say that the physicians in Israel did and are doing their best.”
The family plans to stay in Camden through the end of the month, and then to return every other month for checkups while seeking to raise the funds for their baby’s experimental neurosurgery.
“We actually took it upon ourselves as a mission,” Ben Moshe said. “We think through our child, our baby, it might be possible to create a very big breakthrough. What we are looking for right now is $250,000 Jewish dollars.”
The surgery would involve injecting into the baby’s brain recombinant viruses that contain the needed gene in the hope of preventing further nerve degeneration, according to Ben Moshe. “We are hoping to have it in nine months,” he said. “This is actually supposed to imitate the function of the enzyme and, out of that, to create the myelin.”
Asked to describe the emotional journey he and his wife have been on since they took up their mission, Ben Moshe said, “You know, it’s a very hard confrontation for a person to go through.… We believe that Lavi came to this world with a purpose. We believe we have the privilege to speak for him and to fight his fight for life.
“We are very determined to do whatever we can in order to help him and, I believe, to help the whole Jewish world to find a solution to this disease.”
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