FOLLOW JACOB'S CURE:
To Lexi Alicea, it was a labor of love."I love him as a brother," said Lexi, a sophomore starting forward on the Dobbs Ferry Lady Eagle basketball team.
The object of her affection is Jacob Sontag, a youngster diagnosed with Canavan's disease when he was just six months old.
Surrounded by all nine members of the team and head coach Ed Feller on Feb. 8 prior to the Lady Eagles' key game against rival Blind Brook, Jacob seemed right at home.
"The girls are just fabulous with him - and he loves to be with them," said Jordana Sontag, Jacob's mom.
And, through Lexi and Lexi's mom, Maureen, the rest of the Lady Eagles also fell for the boy, now 6.
Maureen, a private registered nurse, has cared for Jacob for the past three years, beginning her day at 7:30 each morning at Jacob's home in Harrison. She accompanies him to the St. Agnes Children's Rehabilitation Center in White Plains where, from 9 a.m. to 2:30 p.m. he undergoes a variety of therapeutic sessions, plus some regular schooling and classes in socialization. Then, its back home for a message, a bath and maybe a turn on the therapeutic ball.
It was love of the little guy that made the Lady Eagles' work for Jacob's Cure, the foundation created by Sontag to fund research to cure Canavan's disease, so spontaneous.
"My mom told me about the basketball tournament and she said that it would be a gopd idea if the girls did something for it," said Lexi, referring to a Jacob's Cure fund-raising event originally scheduled for mid-November at Basketball City at Chelsea Piers in Manhattan.
But Afyer the devastating events Sept. 11, the tournament was postponed and rescheduled for Feb. 10.
The three-on-three tournament carried a registration fee of $600 per team - which would go towards Jacob's Cure.
"I love Jacob so much that I thought it would great for us to do it," said Lexi.
She continued, "I went to coach [Ed Feller] before the season started and he was all for it. So, we all started going out and trying to raise the money."
All of the Lady Eagles -Lexi, Kim Reznicek, Allison Hartnett, Sandra Glazewski, Regina Barrett, Lindsay Miller, Gina Bruno, Caitlin Donohue and Jessica Shlager -hit the sidewalks of Dobbs Ferry and started asking local business owners for contributions.
"Almost everyone we asked donated something," said Lexi.
She continued, "None of the girls complained about going out and trying to raise the entry fee. They've all met Jacob and they all just love him. ] He has really become our mascot."
In all, the girls took in more than $1,300 - more than enough to enter two teams in the tournament.
"We were the only girls in the tournament, but it wasn't about basketball, it was about helping Jacob," said Lexi.
Canavan's is a deadly disease to the children that are afflicted.
Most will not live to see their 10th birthday. In that short time they will slowly lose their eyesight and become to weak to fight off illness.
To Sontag, Jacob's diagnosis was every parent's nightmare coming true. How do you handle coming to grips with the fact that your child is terminally ill? In her case, the Harrison native decided to fight - against all odds.
"In September of 2000, I created Jacob's Cure, a nonprofit foundation, because of my passion to save the life of my son," she said. "Canavan's'disease is a devastating genetic brain disorder. Because of an enzyme deficiency, Canavan demyelinates the brain. Without myelin, or white matter, Jacob never reached his first milestone - lifting his head."
A former public relations professional in New York City, Sontag had the resources to start Jacob's Cure and to elicit the help of many celebrities.
Among those on the foundation's committee are actress Tara Reid and celebrity public relations giant Lizzie Grubman.
But, besides names, you need people who are willing to go out. and pound the pavement in pursuit of donations. The foot soldiers, so to speak.
In Dobbs Ferry, those foot soldiers were Lexi Alicea and her teammates.
"The girls are just fabulous with him -and he loves to be with them," said Sontag of the basketball team.
Said Maureen, "Lexi is just an amazing girl. I couldn't believe that she put this whole thing together on such short notice."
"Lexi has been pretty close to all of the patients that I've had. I know that some people say that you shouldn't - arid your family shouldn't - get close to your patients. But it's different when you work with children," said Maureen Alicea.
The blond-haired tyke is just slightly over 3 feet tall and weighs in at about 35 pounds. As he sits in his wheelchair, you can't help but warm to him.
"He's so lovable. He is such a happy little boy," said his nurse.
"He's very outgoing to everyone he meets. He always has a smile for you."
"He can't communicate like you and I do, but he finds a way to let you know what he wants. We've developed an eyeblink for him to answer yes to a question," she explained.
On the night of the Blind Brook game, a table was set up outside the entrance to the DFHS gym. As fans filed by, they could not help but be touched by Jacob, his mother, the Lady Eagles.
"Jacob just seems to bring out the best in everyone he meets," explained Sontag.
Fund raising for Canavan's disease began in 1994- solely through the hard work of affected parents. Jacob was born a year later. And from that point in 1995 on, Sontag has been actively involved.
"On March 15, I was invited to testify before the House Sub-Committtee on Labor, Health, Human Services and Education. As a result of my passionate pleas and additional lobbying with House and Senate delegations a grant to support the existing gene-therapy research project and clinical trial under way at Thomas Jefferson in Philadelphia was approved," she explained.
In 1998, Jacob was enrolled in a Phase 1 Gene- Therapy Clinical Safety Trial, where- along with 14 other Canavan children - he showed "positive results and, miraculously, developed new myelin." according to his mother.
Then, on July 10, 2001, Jacob underwent a more advanced gene-therapy , procedure with very promising results.
"Most children with Canavan's lose their eyesight, his is improving," Sontag said.
She continued, "It is my goal and that of Jacob's Cure to continue to support the advancement of research in gene- therapy, as well as the support of neural stem cell transplantation. It is the unique ability of stem cells to provide what the is brain is lacking, while also repairing the damage, that presents great hope in curing Canavan and other brain disorders."
So, the battle continues, if not for t Jacob, then for the little ones down the road.
Donations can be made to: Jacob's Cure, P.O.Box 52, Rye, N.Y.10580.
The object of her affection is Jacob Sontag, a youngster diagnosed with Canavan's disease when he was just six months old.
Surrounded by all nine members of the team and head coach Ed Feller on Feb. 8 prior to the Lady Eagles' key game against rival Blind Brook, Jacob seemed right at home.
"The girls are just fabulous with him - and he loves to be with them," said Jordana Sontag, Jacob's mom.
And, through Lexi and Lexi's mom, Maureen, the rest of the Lady Eagles also fell for the boy, now 6.
Maureen, a private registered nurse, has cared for Jacob for the past three years, beginning her day at 7:30 each morning at Jacob's home in Harrison. She accompanies him to the St. Agnes Children's Rehabilitation Center in White Plains where, from 9 a.m. to 2:30 p.m. he undergoes a variety of therapeutic sessions, plus some regular schooling and classes in socialization. Then, its back home for a message, a bath and maybe a turn on the therapeutic ball.
It was love of the little guy that made the Lady Eagles' work for Jacob's Cure, the foundation created by Sontag to fund research to cure Canavan's disease, so spontaneous.
"My mom told me about the basketball tournament and she said that it would be a gopd idea if the girls did something for it," said Lexi, referring to a Jacob's Cure fund-raising event originally scheduled for mid-November at Basketball City at Chelsea Piers in Manhattan.
But Afyer the devastating events Sept. 11, the tournament was postponed and rescheduled for Feb. 10.
The three-on-three tournament carried a registration fee of $600 per team - which would go towards Jacob's Cure.
"I love Jacob so much that I thought it would great for us to do it," said Lexi.
She continued, "I went to coach [Ed Feller] before the season started and he was all for it. So, we all started going out and trying to raise the money."
All of the Lady Eagles -Lexi, Kim Reznicek, Allison Hartnett, Sandra Glazewski, Regina Barrett, Lindsay Miller, Gina Bruno, Caitlin Donohue and Jessica Shlager -hit the sidewalks of Dobbs Ferry and started asking local business owners for contributions.
"Almost everyone we asked donated something," said Lexi.
She continued, "None of the girls complained about going out and trying to raise the entry fee. They've all met Jacob and they all just love him. ] He has really become our mascot."
In all, the girls took in more than $1,300 - more than enough to enter two teams in the tournament.
"We were the only girls in the tournament, but it wasn't about basketball, it was about helping Jacob," said Lexi.
Canavan's is a deadly disease to the children that are afflicted.
Most will not live to see their 10th birthday. In that short time they will slowly lose their eyesight and become to weak to fight off illness.
To Sontag, Jacob's diagnosis was every parent's nightmare coming true. How do you handle coming to grips with the fact that your child is terminally ill? In her case, the Harrison native decided to fight - against all odds.
"In September of 2000, I created Jacob's Cure, a nonprofit foundation, because of my passion to save the life of my son," she said. "Canavan's'disease is a devastating genetic brain disorder. Because of an enzyme deficiency, Canavan demyelinates the brain. Without myelin, or white matter, Jacob never reached his first milestone - lifting his head."
A former public relations professional in New York City, Sontag had the resources to start Jacob's Cure and to elicit the help of many celebrities.
Among those on the foundation's committee are actress Tara Reid and celebrity public relations giant Lizzie Grubman.
But, besides names, you need people who are willing to go out. and pound the pavement in pursuit of donations. The foot soldiers, so to speak.
In Dobbs Ferry, those foot soldiers were Lexi Alicea and her teammates.
"The girls are just fabulous with him -and he loves to be with them," said Sontag of the basketball team.
Said Maureen, "Lexi is just an amazing girl. I couldn't believe that she put this whole thing together on such short notice."
"Lexi has been pretty close to all of the patients that I've had. I know that some people say that you shouldn't - arid your family shouldn't - get close to your patients. But it's different when you work with children," said Maureen Alicea.
The blond-haired tyke is just slightly over 3 feet tall and weighs in at about 35 pounds. As he sits in his wheelchair, you can't help but warm to him.
"He's so lovable. He is such a happy little boy," said his nurse.
"He's very outgoing to everyone he meets. He always has a smile for you."
"He can't communicate like you and I do, but he finds a way to let you know what he wants. We've developed an eyeblink for him to answer yes to a question," she explained.
On the night of the Blind Brook game, a table was set up outside the entrance to the DFHS gym. As fans filed by, they could not help but be touched by Jacob, his mother, the Lady Eagles.
"Jacob just seems to bring out the best in everyone he meets," explained Sontag.
Fund raising for Canavan's disease began in 1994- solely through the hard work of affected parents. Jacob was born a year later. And from that point in 1995 on, Sontag has been actively involved.
"On March 15, I was invited to testify before the House Sub-Committtee on Labor, Health, Human Services and Education. As a result of my passionate pleas and additional lobbying with House and Senate delegations a grant to support the existing gene-therapy research project and clinical trial under way at Thomas Jefferson in Philadelphia was approved," she explained.
In 1998, Jacob was enrolled in a Phase 1 Gene- Therapy Clinical Safety Trial, where- along with 14 other Canavan children - he showed "positive results and, miraculously, developed new myelin." according to his mother.
Then, on July 10, 2001, Jacob underwent a more advanced gene-therapy , procedure with very promising results.
"Most children with Canavan's lose their eyesight, his is improving," Sontag said.
She continued, "It is my goal and that of Jacob's Cure to continue to support the advancement of research in gene- therapy, as well as the support of neural stem cell transplantation. It is the unique ability of stem cells to provide what the is brain is lacking, while also repairing the damage, that presents great hope in curing Canavan and other brain disorders."
So, the battle continues, if not for t Jacob, then for the little ones down the road.
Donations can be made to: Jacob's Cure, P.O.Box 52, Rye, N.Y.10580.