FOLLOW JACOB'S CURE:
Boy Battles Rare Disease
By Rich Logis
Jacob Sontag is considered the "poster child" for disease.
Jacob has Canavan's disease, a neurological disorder in the brain. The 7-year-old uses a wheelchair and receives daily therapy. He comprehends everything said to him and can say "yeah" and "oh," which in Jacob's language means "no." Jacob also responds with facial expressions.
Jacob does things other children do, such as watch cartoons. He particularly enjoys "SpongeBob SquarePants."
But it is not the normal life of a 7-year-old. His mother, Jordana Holovach, calls him the poster child because of her conviction that one day, Jacob will be a symbol of a child who was cured. Holovach also believes that once the cure for Canavan's is found, it will lead to cures for Parkinson's and other diseases.
To cure Jacob of Canavan's would enable him to walk and talk, Holovach said. She founded Jacob's Cure in 2000 and has raised $600,000 thus far, much of! it through private donations and solicitations.
Making progress
Canavan's deteriorates the part of the brain that protects the nerves in the brain and spinal cord. This white matter helps transmit nerves throughout the body. The disease was first discovered by Dr. Myrtle Canavan in 1931.
In their Harrison home, when Jacob watches television, he needs a stander, which is a kind of vertical gurney. At the age of 7, Jacob has lived longer than many with Canavan's. The typical life expectancy is 3 to 10 years. And though his progress has been remarkable, Holovach said, things could change in an instant.
Holovach said she is not in the position of a typical parent who puts her child on the bus in the morning and knows he'll be cared for in school. That is a gift for parents, she said. Holovach said she constantly checks with the King Street Elementary School in Port Chester and the therapists. (Though Jacob goes to school in Port Chester, the Harriso! n Central School District is responsible for funding Jacob's education .)
Holovach said she is determined to see Jacob walk and live to his 20s, which would be nothing less than a miracle, she said.
"It's taken a lot of work to get Jacob to where he is today," Holovach said. "The doctors initially told me I would watch my child die."
Holovach said she knew something was not right with Jacob when he was about 2 months old. He didn't respond the way healthy babies do and couldn't hold his head up. Soon after, he was diagnosed with Canavan's.
The discussions with the doctors were ironic, she said. "It's usually the parent who needs to be assured because they're in denial, and I'm on the phone trying to convince the pediatrician," Holovach said and laughed.
Working to find a cure has been one of the most taxing ordeals of Holovach's life, she said. She has testified before Congress to ask that more funding be provided for Canavan research. According to Holovach, with so few Canavan cases, pharmaceutical companies ! are not willing to support the research needed to find a cure.
Paolo Leone has been a source of inspiration and information, Holovach said. A professor at the Robert Wood Johnson Medical School at the University of Medicine and Dentistry of New Jersey, Leone met Jacob and his mother right after Jacob was diagnosed.
Leone, who has conducted research into Canavan's, said in an e-mail that 1,000 people worldwide have the disease, with 200 of those in the United States.
"Ms. Holovach has had the incredible stamina to overcome the excruciating pain of Jacob's diagnosis by devoting her life to caring for Jacob and to the mission of finding a cure for Canavan disease," Leone said. "Jordana's dedication to Jacob and her endurance to promote funding for research makes her a true living heroine."
"She's as concerned with finding a cure as I am," Holovach said. "She's like a sister. I get two, three calls from her a day."
Holovach does most of the pu! blicity and work of Jacob's Cure herself. A neighborhood community and her husband and high school sweetheart, Gareth, also help. Jacob's Cure, the "little group" that started in Rye, has expanded all over the world, Holovach said.
Holovach said she had to hire an attorney because Jacob has not received appropriate care from the Harrison school district. A special computer at the King Street school has not been fully incorporated into his daily lessons, she said.
Ralph DeMarco, attorney for the Harrison district, said the district's handling of Jacob is confidential. "I cannot disclose what the district's position is."
Recordings
New York University film student Stefenie Sasson filmed Jacob and his family for a year. "As Daylight Breaks" is an account of his everyday life and struggles, from schooling to therapy. It is also an account of his family's struggle in finding a cure and providing everything he needs. The film has been a fund-raising and awareness tool, Sasson said. It premiered in Lincoln Center in May an! d has raised $100,000. Sasson has entered it into other international film festivals as well. Friends of Holovach's who live in Manhattan will hold private screenings of the film to raise money.
Sasson and Holovach met last year when she found out about Jacob's Cure. "Her drive to make Jacob your regular 7-year-old has been pretty amazing," Sasson said.
"It was a huge risk for her to give us total control," Sasson said. "The responses have been amazing. The most important thing for us was to tell his story truthfully. I hope we did that."
Sasson said the importance of the film didn't dawn on her until months into filming. She realized that it could be a mechanism to raise money and educate people about Canavan's.
"Jacob is a life-altering presence," Sasson said.
Holovach has also appeared on the "Today Show."
Daily life
Holovach gets up at 6 a.m., to get Jacob's things ready. Jacob rises at 7 a.m. She feeds him through a feed! ing tube and brushes his teeth.
Jacob takes 17 medications dail y, goes to school, does muscular therapy and swimming and travels to Blythdale Children's Hospital in Valhalla. "It's exhausting but it's why he looks and feels so good," Holovach said.
Holovach said she doesn't let the exhaustion and frustration affect her goal of curing Jacob. "I feel like I live through him ... to see that he gets everything he's entitled to."
Working for a cure and her family are most important to Holovach, she said. As he gets older, she worries about how he'll be educated, how he'll grow into an adult. "It's those day-to-day questions that I struggle with every day. Every time we go for another MRI, I'm sick to my stomach. The last MRI was four months ago, so who knows what's happened since then?"
When Jacob is cured someday, Holovach said, he will be the poster boy for the importance of funding research and finding cures.
"I really believe that he landed in my belly for a reason. He's an angel. He doesn't speak but he speak! s volumes."
FYI
Jacob's Cure can be found on the Web at www.jacobscure.org. The organization's e-mail is jacobs-cure@msn.com. The telephone number is 673-2796.
Copyright (c) The Journal News. All rights reserved. Reproduced with the permission of Gannett Co., Inc. by NewsBank, inc.
Jacob has Canavan's disease, a neurological disorder in the brain. The 7-year-old uses a wheelchair and receives daily therapy. He comprehends everything said to him and can say "yeah" and "oh," which in Jacob's language means "no." Jacob also responds with facial expressions.
Jacob does things other children do, such as watch cartoons. He particularly enjoys "SpongeBob SquarePants."
But it is not the normal life of a 7-year-old. His mother, Jordana Holovach, calls him the poster child because of her conviction that one day, Jacob will be a symbol of a child who was cured. Holovach also believes that once the cure for Canavan's is found, it will lead to cures for Parkinson's and other diseases.
To cure Jacob of Canavan's would enable him to walk and talk, Holovach said. She founded Jacob's Cure in 2000 and has raised $600,000 thus far, much of! it through private donations and solicitations.
Making progress
Canavan's deteriorates the part of the brain that protects the nerves in the brain and spinal cord. This white matter helps transmit nerves throughout the body. The disease was first discovered by Dr. Myrtle Canavan in 1931.
In their Harrison home, when Jacob watches television, he needs a stander, which is a kind of vertical gurney. At the age of 7, Jacob has lived longer than many with Canavan's. The typical life expectancy is 3 to 10 years. And though his progress has been remarkable, Holovach said, things could change in an instant.
Holovach said she is not in the position of a typical parent who puts her child on the bus in the morning and knows he'll be cared for in school. That is a gift for parents, she said. Holovach said she constantly checks with the King Street Elementary School in Port Chester and the therapists. (Though Jacob goes to school in Port Chester, the Harriso! n Central School District is responsible for funding Jacob's education .)
Holovach said she is determined to see Jacob walk and live to his 20s, which would be nothing less than a miracle, she said.
"It's taken a lot of work to get Jacob to where he is today," Holovach said. "The doctors initially told me I would watch my child die."
Holovach said she knew something was not right with Jacob when he was about 2 months old. He didn't respond the way healthy babies do and couldn't hold his head up. Soon after, he was diagnosed with Canavan's.
The discussions with the doctors were ironic, she said. "It's usually the parent who needs to be assured because they're in denial, and I'm on the phone trying to convince the pediatrician," Holovach said and laughed.
Working to find a cure has been one of the most taxing ordeals of Holovach's life, she said. She has testified before Congress to ask that more funding be provided for Canavan research. According to Holovach, with so few Canavan cases, pharmaceutical companies ! are not willing to support the research needed to find a cure.
Paolo Leone has been a source of inspiration and information, Holovach said. A professor at the Robert Wood Johnson Medical School at the University of Medicine and Dentistry of New Jersey, Leone met Jacob and his mother right after Jacob was diagnosed.
Leone, who has conducted research into Canavan's, said in an e-mail that 1,000 people worldwide have the disease, with 200 of those in the United States.
"Ms. Holovach has had the incredible stamina to overcome the excruciating pain of Jacob's diagnosis by devoting her life to caring for Jacob and to the mission of finding a cure for Canavan disease," Leone said. "Jordana's dedication to Jacob and her endurance to promote funding for research makes her a true living heroine."
"She's as concerned with finding a cure as I am," Holovach said. "She's like a sister. I get two, three calls from her a day."
Holovach does most of the pu! blicity and work of Jacob's Cure herself. A neighborhood community and her husband and high school sweetheart, Gareth, also help. Jacob's Cure, the "little group" that started in Rye, has expanded all over the world, Holovach said.
Holovach said she had to hire an attorney because Jacob has not received appropriate care from the Harrison school district. A special computer at the King Street school has not been fully incorporated into his daily lessons, she said.
Ralph DeMarco, attorney for the Harrison district, said the district's handling of Jacob is confidential. "I cannot disclose what the district's position is."
Recordings
New York University film student Stefenie Sasson filmed Jacob and his family for a year. "As Daylight Breaks" is an account of his everyday life and struggles, from schooling to therapy. It is also an account of his family's struggle in finding a cure and providing everything he needs. The film has been a fund-raising and awareness tool, Sasson said. It premiered in Lincoln Center in May an! d has raised $100,000. Sasson has entered it into other international film festivals as well. Friends of Holovach's who live in Manhattan will hold private screenings of the film to raise money.
Sasson and Holovach met last year when she found out about Jacob's Cure. "Her drive to make Jacob your regular 7-year-old has been pretty amazing," Sasson said.
"It was a huge risk for her to give us total control," Sasson said. "The responses have been amazing. The most important thing for us was to tell his story truthfully. I hope we did that."
Sasson said the importance of the film didn't dawn on her until months into filming. She realized that it could be a mechanism to raise money and educate people about Canavan's.
"Jacob is a life-altering presence," Sasson said.
Holovach has also appeared on the "Today Show."
Daily life
Holovach gets up at 6 a.m., to get Jacob's things ready. Jacob rises at 7 a.m. She feeds him through a feed! ing tube and brushes his teeth.
Jacob takes 17 medications dail y, goes to school, does muscular therapy and swimming and travels to Blythdale Children's Hospital in Valhalla. "It's exhausting but it's why he looks and feels so good," Holovach said.
Holovach said she doesn't let the exhaustion and frustration affect her goal of curing Jacob. "I feel like I live through him ... to see that he gets everything he's entitled to."
Working for a cure and her family are most important to Holovach, she said. As he gets older, she worries about how he'll be educated, how he'll grow into an adult. "It's those day-to-day questions that I struggle with every day. Every time we go for another MRI, I'm sick to my stomach. The last MRI was four months ago, so who knows what's happened since then?"
When Jacob is cured someday, Holovach said, he will be the poster boy for the importance of funding research and finding cures.
"I really believe that he landed in my belly for a reason. He's an angel. He doesn't speak but he speak! s volumes."
FYI
Jacob's Cure can be found on the Web at www.jacobscure.org. The organization's e-mail is jacobs-cure@msn.com. The telephone number is 673-2796.
Copyright (c) The Journal News. All rights reserved. Reproduced with the permission of Gannett Co., Inc. by NewsBank, inc.