Jordana Holovach is tenacious.
In the first few minutes of “As Daylight Breaks,” a documentary about Holovach, 33, and her 7-year-old son, Jacob Sontag, Holovach reads aloud the first page of her journal.
“November 19, 2002,” the pretty, blond-haired Holovach says, without betraying any emotion. “My Jacob — my beautiful 6-year-and-9-month-old son — [was] diagnosed with a fatal neurological disorder called Canavan disease… [at] 7 months and has been the focus of my life ever since.”
Holovach then descends into the trials that she and her son have endured.
“Three gene therapies, two brain surgeries, one spinal tap, upward of 30 MRIs, one shunt, 10 or more shunt taps, two pneumonias, hospitalization in six different hospitals, upwards of 20 specialists, brace clinics, equipment clinics, countless CPSCs, CSC and early-intervention meetings, five trips to lobby Congress, one trip to fight the FDA…”
She goes on and on — describing her divorce from Jacob’s father, the death of her mother as well as the sweet things in her life: her new marriage, her son’s first day of school and more.
Holovach is one of the leading crusaders for children with Canavan disease: She is the founder of Jacob’s Cure, which raises money for Canavan research. “As Daylight Breaks” is only the latest in the whirlwind of efforts she has undertaken to focus attention on the disease, all while taking care of her bespectacled, fair-haired son.
Stefenie Sasson, director of “As Daylight Breaks,” shot 180 hours of footage for the 52-minute documentary, portraying mother and son as they go through their daily life together. In it, we see Holovach explaining the world to her son, and Jacob smiling and laughing in appreciation of his mother and her efforts.
Children afflicted with Canavan disease cannot produce the enzyme Apartoacyclase, which, in turn, causes the white matter around the brain and spinal cord to deteriorate. The white matter — called myelin — ensures that nerve impulses are properly transmitted from the brain to other parts of the body. (See accompanying article.)
One in 40 Ashkenazi Jews is a carrier of the Canavan gene, which was discovered in 1993, and one in 6,400 Ashkenazi Jewish children are born with the disease. Afflicted children cannot speak, often go blind, develop seizures and have tremendous difficulty eating. Often, their immune systems fail. Most Canavan children die before they are 10 years old.
Indeed, when Sontag was first diagnosed, Holovach was told that his situation was hopeless. But both Sontag and Holovach were stalwart. In 2001 Sontag became the third Canavan child to undergo the latest gene therapy, which consists of drilling tiny holes into different points in the brain and pumping in healthy copies of the gene into six sections of the brain.
The procedure went extremely well. “He’s responding, he’s still progressing,” said Dr. Paola Leone, an assistant professor at Robert Wood Johnson Medical School. “At that age there shouldn’t be any progression — he should be in a vegetative state.” Leone said she believes that a complete cure might be very close, if the money and support were there.
Watching Holovach in “As Daylight Breaks” one could definitely believe that she is the woman to rally support. Holovach has fought with the Food and Drug Administration and the National Institutes of Health over getting approval and funding for the gene therapy.
“The FDA would send back [our] applications every six weeks,” Holovach said. Six weeks in the life of a child afflicted with Canavan disease is an eternity. “Literally, they did not like the grammatical errors [in the application]…. Those are the types of responses we got,” she said.
“People say, ‘You’re just a desperate parent,’” Holovach said. “Of course I’m desperate — but I’m not crazy.”
In 2001 she and her son went to Capitol Hill, where she met with Senators Hillary Rodham Clinton, Charles Schumer and Arlen Specter. Clinton was so outraged when she heard about the delays Holovach was experiencing, said Holovach, that “she sent a seething letter to the [National Institutes of Health] saying, ‘How dare you not fund this?’” Holovach said that Schumer likewise told her: “Whatever you need — tell me.”
Despite the encouraging advances in gene therapy and the sympathetic ears from some in Washington, Holovach said that a great deal of future work on the disease will involve stem cell research, which is extremely controversial with the Bush administration.
“Until we have a new administration, [it’s going to be] hard to get FDA to approve stem cell trials,” Holovach said. “They get their funding from the government and they don’t want to anger anyone that’s providing their funding.”
In the meantime, however, Holovach will be showing “As Daylight Breaks” to as many people as she can. She is arranging screenings with the 92nd Street Y in New York — one mother, determined to save her son.