Posadas lead fight to help families cope with Craniosynostosis
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."
When Jorge Luis was diagnosed with CS, Laura Posada was flooded with feelings ranging from anger to frustration to confusion. She asked herself, "Why me? What did I do to deserve this?" She isn't proud of those feelings, but that's what they were. She says she and Jorge could scarcely think of anything else but their baby's plight. "I just wanted to find a 10-year-old kid who had this who was running around and healthy," she says. "That was the biggest thing for me."
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.
Says Staffenberg of Montefiore, "This is a case when conventional wisdom leads people down the wrong path. People may think, 'If this is a big operation, maybe we should take care of it later, (but the fact is) that babies do better in this surgery, and after the surgery, than older patients do." It is precisely this sort of information Jorge and Laura Posada want to get out there.
"There are a million foundations," Laura says. "Everyone thinks about cancer and diabetes, and everybody knows about them. Craniosynostosis is now known because of Jorge, and that's something we're very proud of."
Antonio Rangel and Vicglamar Torres' baby had his surgery at nine months, and unlike Jorge Luis Posada, is not expected to need more. He had to undergo a grinding year of physical therapy, and had to sleep sitting up for six months to abet the post-surgery healing process, even as his parents struggled to cope with the horribly insensitive behavior of people who would stare at his head (it was temporarily enlarged after the operation) or the real-estate broker who, while showing the couple apartments, looked sadly at Gabriel and said to his parents, "What happened? Did he fall?"
Friday morning wasn't the time to dwell on such things, though. It was a morning for Vicglamar Torres to walk down the aisle with her 3-year-old boy, and feel joy. "It's a double celebration for us," she says. "A day to celebrate our wedding, and our son."
Laura Posada vividly recalls an impromptu celebration of her own, one that came just six months ago, on a quiet residential street near the Posadas' winter home in Tampa. The family was out for a bike ride, Jorge Sr., Jorge Luis, and Laura riding with their young daughter, Paulina, on the back. Laura looked up to see Jorge Luis cycling down the street, pedaling away, the picture of vitality and normalcy. He was just like any other 8-year-old boy, eight surgeries notwithstanding.
"It was one of the happiest days of my life," Laura says. Vicglamar Torres, a reporter for Hoy, a Spanish newspaper in New York, had a similar epiphany when Gabriel was 18 months old. He was going through a lot of therapy to improve his coordination and functioning of the right side of his body. Vicglamar was frustrated about the slow rate of progress. And then, suddenly, Gabriel coiled his body and jumped in the air one day, and then did it again. Vicglamar could scarcely believe what she was seeing, and then she started to jump too, the two of them bounding up and down, giggling as they went. She cries as she recounts the memory, of her son impersonating a pogo stick, and what it meant to her.
A night before the wedding, Antonio and Vicglamar are going over final plans in their apartment in Union City, N.J. In the kitchen, family members are assembling the wedding cake, while Gabriel finishes working on his ABCs in his bedroom, then lines up a dozen toy cars in the living room, as if it were the start of a NASCAR race. The big party is just 12 hours away, and by the next morning, on a sun-dappled day by river's edge, the party is on, and Gabriel Rangel is in his little tuxedo with an orchid on the left lapel, getting ready to walk with his mother. When he and his mom first come into view on the patio, all the guests begin to clap. Gabriel lets out a little squeal and has a bout of shyness, hiding briefly behind his mother's wedding dress, before he re-emerges. A moment later they begin their walk.
All eyes are on the mother and her son as they reach the altar, where Antonio scoops up the little boy and kisses him, and holds him in his arms through the whole ceremony. When the justice of the peace tells Antonio he can kiss the bride, he does just that and then a cheer goes up, and an instant later 3-year-old Gabriel Rangel decides he's not going to miss out on this. He kisses his mother and then his father, and then does it again, back and forth, kissing one parent and then the other, a smile fixed on his face, and on his parents' faces, too.
Antonio Rangel and Vicglamar Torres put off their wedding for a long time while their son was going through his surgery, and his therapy. You see the three of them smiling and kissing, and you are pretty sure the wait was worth it. Vicglamar Torres brushes away a tear.
"Two and a half years ago, we didn't know if we would ever have this moment," she says. "Now we have it, and it is a beautiful thing."
Posted By: By Wayne Coffey - Daily News Sports Writer
More Information: http://jorgeposada.com/release/straight_from_their_hearts
