Laura
06-16-2008, 06:19 AM
http://www.nydailynews.com/sports/baseball/yankees/2008/06/14/2008-06-14_posadas_lead_fight_to_help_families_cope.html
Posadas lead fight to help families cope with craniosynostosis
BY WAYNE COFFEY
DAILY NEWS SPORTS WRITER
Saturday, June 14th 2008, 4:16 PM
Two days ago on the west bank of the Hudson River, at a waterside restaurant in Weehawken, N.J., three-year-old Gabriel Rangel took his mother on the most emotional walk of her life. He wore a tiny black tuxedo and a look of brown-eyed wonder. His mother, Vicglamar Torres, wore a flowing white wedding dress and a look of absolute adoration.
"We're going to have a big party," Gabriel told his parents the day before. He had no idea how right he was.
Together, hand in hand, they walked down the aisle of a patio, mother and child surrounded by 75 family members and friends, and hope as palpable as the Manhattan skyline that shimmered across the river. Vicglamar Torres was here to marry Antonio Rangel, Gabriel's father, and she wasn't very far down the aisle when deep feelings began to come up, a cyclone of emotion spinning through her, the main one being gratitude.
How was she not supposed to be overcome, being escorted on her wedding day by her miracle baby? How could she not think about all the doubts, all the worry, all the bad things that could've happened, but didn't?
And how could she not reflect on the condition - craniosynostosis (CS) - her son was born with, and on the five-hour, $100,000 surgery he had as a nine-month-old? On all the kindness and compassion she received from Laura Posada, a mother who knew exactly what she was feeling, and spent hours talking with her - whenever Vicglamar Torres needed it - to help her through everything?
"She does huge work, beautiful work," Vicglamar Torres says. "When someone like that shares her experience with you, not about medical and technical things, but about all the emotions, it just makes you feel so understood and supported."
Says Laura Posada, "Every time a mom or dad calls me, and I hear their voice shaking, I know how they are feeling, because that was me once. You can talk to 2,000 doctors, but until you talk to someone who has lived it, you don't believe it."
It has been a relentlessly up-and-down baseball season in the Bronx, and a largely frustrating season for the Yankees' All-Star catcher, Jorge Posada, who, one year after the greatest year of his career, is just now playing again after a six-week stay on the disabled list with a shoulder injury.
It has, however, been a stellar season for the Jorge Posada Foundation, which will hold its annual gala at the Pierre Hotel tomorrow night, hoping to raise more than $600,000 in cash and in-kind gifts. The larger goal is to further an ambitious agenda that was born eight years ago, after the Posadas' son, Jorge Luis, underwent the first of what would be eight surgeries to correct his CS - an often-complicated condition in which the bones of the skull fuse prematurely, a potentially life-threatening disorder that can compromise everything from brain function to vision to hearing.
One out of every 2,000 children is born with CS, according to Teresa Segarra, executive director of the Jorge Posada Foundation. Jorge and Laura Posada had often discussed starting a community-service or charitable initiative, and always assumed it would be centered around sports, possibly in their native Puerto Rico. Their plans changed swiftly.
"When Jorge was born, it hit us, ‘Oh my God, this is what we have to do. This is what we are supposed to do,'" Laura Posada says. "We are in a position where we can help a lot of people who are in the same situation that we are."
Dr. David Staffenberg is the director of craniofacial surgery at the Children's Hospital at Montefiore Medical Center in the Bronx, a partner institution that has received an estimated $150,000 in funding from the Jorge Posada Foundation. Not long ago, the foundation supplied the hospital with state-of-the-art surgical tools to perform the 70 CS surgeries it does annually.
"This is a very, very personal mission for the Posadas," Staffenberg says. "The good they've done and the difference they've made has been immeasurable."
***...
The more Laura and Jorge searched for answers and options and information, the more they were shocked at the alarming paucity of what was available, and the absence of a viable support group. In time the self-pity passed, and a mission took root. Jorge and Laura Posada were fired with a fresh purpose.
"Now we have to do something so other people don't have to go through the same hell that we have lived with," Laura says.
With the foundation as their vehicle, the Posadas provide financial support through their partner hospitals for needy families that have a child with CS, though their services go beyond dollars and cents. They work tirelessly to raise awareness about CS and increase research funding, and to offer comfort to families who are grappling with it.
"This has been the most difficult situation I've faced in my whole life," Vicglamar Torres says. "When you are going through it you feel like you are the only one in the whole world who is dealing with it." The crushing sense of isolation began to end when Antonio, a systems analyst for an investment bank, came across jorgeposada.com, and Vicglamar began speaking directly with Laura.
"Her commitment to this is 200%," Antonio says. "You can reach her anytime you need her."
***
This November the Jorge Posada Foundation is sponsoring a craniosynostosis symposium in the city, bringing together surgeons, pediatricians, geneticists and families in order to better understand CS, discuss treatment plans and family-support models - and to educate pediatricians about how to recognize it. Early diagnosis and intervention is a vital component to treatment, and according Segarra, the sad truth is that many pediatricians do not pick up on the problem. Concerned about their baby's misshapen and enlarged head, Rangel and Torres say that three different pediatricians assured them there was nothing wrong, before Gabriel was properly diagnosed.
...
see more at http://www.nydailynews.com
Posadas lead fight to help families cope with craniosynostosis
BY WAYNE COFFEY
DAILY NEWS SPORTS WRITER
Saturday, June 14th 2008, 4:16 PM
Two days ago on the west bank of the Hudson River, at a waterside restaurant in Weehawken, N.J., three-year-old Gabriel Rangel took his mother on the most emotional walk of her life. He wore a tiny black tuxedo and a look of brown-eyed wonder. His mother, Vicglamar Torres, wore a flowing white wedding dress and a look of absolute adoration.
"We're going to have a big party," Gabriel told his parents the day before. He had no idea how right he was.
Together, hand in hand, they walked down the aisle of a patio, mother and child surrounded by 75 family members and friends, and hope as palpable as the Manhattan skyline that shimmered across the river. Vicglamar Torres was here to marry Antonio Rangel, Gabriel's father, and she wasn't very far down the aisle when deep feelings began to come up, a cyclone of emotion spinning through her, the main one being gratitude.
How was she not supposed to be overcome, being escorted on her wedding day by her miracle baby? How could she not think about all the doubts, all the worry, all the bad things that could've happened, but didn't?
And how could she not reflect on the condition - craniosynostosis (CS) - her son was born with, and on the five-hour, $100,000 surgery he had as a nine-month-old? On all the kindness and compassion she received from Laura Posada, a mother who knew exactly what she was feeling, and spent hours talking with her - whenever Vicglamar Torres needed it - to help her through everything?
"She does huge work, beautiful work," Vicglamar Torres says. "When someone like that shares her experience with you, not about medical and technical things, but about all the emotions, it just makes you feel so understood and supported."
Says Laura Posada, "Every time a mom or dad calls me, and I hear their voice shaking, I know how they are feeling, because that was me once. You can talk to 2,000 doctors, but until you talk to someone who has lived it, you don't believe it."
It has been a relentlessly up-and-down baseball season in the Bronx, and a largely frustrating season for the Yankees' All-Star catcher, Jorge Posada, who, one year after the greatest year of his career, is just now playing again after a six-week stay on the disabled list with a shoulder injury.
It has, however, been a stellar season for the Jorge Posada Foundation, which will hold its annual gala at the Pierre Hotel tomorrow night, hoping to raise more than $600,000 in cash and in-kind gifts. The larger goal is to further an ambitious agenda that was born eight years ago, after the Posadas' son, Jorge Luis, underwent the first of what would be eight surgeries to correct his CS - an often-complicated condition in which the bones of the skull fuse prematurely, a potentially life-threatening disorder that can compromise everything from brain function to vision to hearing.
One out of every 2,000 children is born with CS, according to Teresa Segarra, executive director of the Jorge Posada Foundation. Jorge and Laura Posada had often discussed starting a community-service or charitable initiative, and always assumed it would be centered around sports, possibly in their native Puerto Rico. Their plans changed swiftly.
"When Jorge was born, it hit us, ‘Oh my God, this is what we have to do. This is what we are supposed to do,'" Laura Posada says. "We are in a position where we can help a lot of people who are in the same situation that we are."
Dr. David Staffenberg is the director of craniofacial surgery at the Children's Hospital at Montefiore Medical Center in the Bronx, a partner institution that has received an estimated $150,000 in funding from the Jorge Posada Foundation. Not long ago, the foundation supplied the hospital with state-of-the-art surgical tools to perform the 70 CS surgeries it does annually.
"This is a very, very personal mission for the Posadas," Staffenberg says. "The good they've done and the difference they've made has been immeasurable."
***...
The more Laura and Jorge searched for answers and options and information, the more they were shocked at the alarming paucity of what was available, and the absence of a viable support group. In time the self-pity passed, and a mission took root. Jorge and Laura Posada were fired with a fresh purpose.
"Now we have to do something so other people don't have to go through the same hell that we have lived with," Laura says.
With the foundation as their vehicle, the Posadas provide financial support through their partner hospitals for needy families that have a child with CS, though their services go beyond dollars and cents. They work tirelessly to raise awareness about CS and increase research funding, and to offer comfort to families who are grappling with it.
"This has been the most difficult situation I've faced in my whole life," Vicglamar Torres says. "When you are going through it you feel like you are the only one in the whole world who is dealing with it." The crushing sense of isolation began to end when Antonio, a systems analyst for an investment bank, came across jorgeposada.com, and Vicglamar began speaking directly with Laura.
"Her commitment to this is 200%," Antonio says. "You can reach her anytime you need her."
***
This November the Jorge Posada Foundation is sponsoring a craniosynostosis symposium in the city, bringing together surgeons, pediatricians, geneticists and families in order to better understand CS, discuss treatment plans and family-support models - and to educate pediatricians about how to recognize it. Early diagnosis and intervention is a vital component to treatment, and according Segarra, the sad truth is that many pediatricians do not pick up on the problem. Concerned about their baby's misshapen and enlarged head, Rangel and Torres say that three different pediatricians assured them there was nothing wrong, before Gabriel was properly diagnosed.
...
see more at http://www.nydailynews.com