The Jorge Posada Foundation

The Jorge Posada Foundation is a non-profit organization established by the New York Yankees’ All-Star Catcher, Jorge Posada, and his wife, Laura. Their son, Jorge Luis, was diagnosed with Craniosynostosis when he was just ten days old and has undergone eight major surgeries to correct the condition. Jorge and Laura are very grateful that all of Jorge Luis’ surgeries have been successful and that they were able to financially support the procedures. However, there are many other families who are not as fortunate. 

The purpose of The Jorge Posada Foundation is to: reach out to families in need, whose children are affected by Craniosynostosis, and provide them with emotional support through its family support network; provide financial assistance to underwrite a portion of the costs of initial surgeries in its partner medical centers; and encourage further research of this medical condition. The Foundation also strives to create awareness about the condition through events and through funding other educational outreach efforts.

KEYS ISSUES: WHAT WE DO AND HOW WE HELP?


SUPPORT FOR PARENTS AND CHILDREN
Jorge Posada Foundation’s Mentors Program
Sponsor of family conferences and events, such as: the North American Craniofacial Family Conference and the Children’s Craniofacial Association Cher’s Family Retreat

FINANCIAL ASSISTANCE TO FAMILIES IN NEED
Provide grants to and partner with medical centers to increase their capacity to provide pro-bono surgeries and underwrite associated costs, such as: The Children’s Hospital at Montefiore; The Institute for Reconstructive Plastic Surgery at New York University Hospital through NFFR; Connecticut
Children’s Medical Center Foundation; and Winthrop Medical Center

EDUCATION & TREATMENT - EARLY AND ACCURATE DIAGNOSIS
Sponsor educational seminars for pediatricians, such as the 2008 Craniosynostosis Symposium in partnership with Montefiore Medical Center
Partner with the National Foundation for Facial Reconstruction to develop a virtual teaching tool to be distributed to 15,000 doctors in third-world countries and throughout the U.S.
Provide grant to rehabilitate Craniosynostosis surgery recovery room at Centro Medico Hospital, Puerto Rico

INCREASE AWARENESS
Events such as the Annual Heroes for Gala in New York City and the Celebrity Base-Bowl Tournament in Puerto Rico
TV & Radio Public Service Announcements
TV programming placements, such as: ABC’s “Extreme Makeover Home Edition”; Fox Channel nationwide movie promotion of “Everyone’s Hero”; Discovery Channel’s “American Chopper” and “Pioneros”; YES Network’s “Ultimate Road Trip” and “Kids On Deck”; and other television and news programming in the U.S. and Puerto Rico
Newspaper & magazine articles, features, and PSAs, both in the U.S. and Puerto Rico, such as: Gotham Magazine, Daily News, Chicago Sun Times, El Vocero
“Play Ball” book signings, multiple locations

Why Did This Happen to Me? by Laura Posada

Ever since I can remember, I have had a very privileged life. I had almost all of the things that can make anyone happy, and everything in my life was going perfectly according to plan. Unexpectedly, something happened that completely changed my life. On November 28, 1999, in my beloved island of Puerto Rico, my son Jorge Luis was born.

Looking back, I think that was the first day I ever knew love at first sight, unconditional love, pure love, a mother’s love. Unfortunately, I can’t say that it was the happiest moment of my life, because my son Jorge was born with Craniosynostosis. I found out when he was barely ten days old, and my world crumbled.

When the doctor told me the news my mind was racing with questions. And I have to admit that my selfish attitude at the time asked, “Why did this have to happen to me?” Well, why not? What made me more vulnerable to this or that disease? And finally, why did I keep thinking about myself since it wasn’t even happening to me? That was precisely the worst part, that it was my newborn son, who was innocent, defenseless, vulnerable and had so much to live for, who had this condition. That question hung in the air, along with many others. What I didn’t see, couldn’t see at the time, was that my stupid plan was worthless, and that my fate and life were destined for a different plan.

Slowly the agonizing days went by while we waited for the first 12-hour surgery, when they would open my son’s skull and take out his small bones in an effort to reconstruct him. My daily menu featured desperation, frustration, and a sense of impotence, served by the day, the hour, the minute and even the second. I looked for information in encyclopedias, books, the Internet, and on Posada television, but they were all dead ends. Each time I found medical explanations with chilling illustrations that did little to satisfy my need for information. Though in reality, it was my need to hear another mother tell me that everything was going to be fine. The nights were an eternity and the days never-ending. I lost contact with the world and with the reality of the situation.

During those 9 months, I decided to wage an internal battle with the help of my friend, solitude. I didn’t even tell my husband Jorge how I felt, and would spend the day with a rehearsed smile pretending that everything was fine. I didn’t share my feelings with relatives or friends either, since I felt I was the only one, that no one else had this disease and that therefore no one else could understand how I felt. And things went on like this, ignoring the elephant in the room, until that day—the day before the surgery.

Everyone was already sleeping and I locked myself in the bathroom so that I could shower. Once there, my tired mind and body, unable to pretend any longer, gave in, and all I could do was cry and cry and cry. And it was precisely at that moment that I realized that life was showing me what my plan was. I couldn’t allow this to remain a secret and let other mothers feel the way I had felt. It was time to grow and open my heart to all of those families that were affected by this enemy, an enemy that for many years had inflicted its harm silently and unknowingly. Now I understand why this happened to me: so that I could help others avoid this pain and show them that there is a light at the end of the tunnel.

Now I understand how much happiness you can give another mother with a simple glance, some words of support, a hug, or just a call from a stranger who’s living a parallel life and who can tell her “everything will be fine”. I don’t feel like wasting my time anymore asking “Why did this happen to me?” Now I feel that, through the Jorge Posada Foundation, there are more important things that I can do to help the children and families affected by Craniosynostosis. To me, it’s clearer than ever that the “Why?” isn’t the question that matters, but rather “What will I do to help many people be happy?”

If I become pregnant “again" will my next child also suffer from craniosynostosis? By Margie Alvarez & Gian Carlos Gierbolini

"Parents of Gian Carlos Gierbolini"

I asked myself this question when they told me that Gian Pablo needed an operation for his Craniosynostosis,a condition that we didn’t have a family history of. He was our first son and the first grandson in our family.During the course of Gian Pablo’s operation, I asked lots of questions and found out that in some families it affects many of the children and spans generations,and in other families it is an isolated condition, like in our case. If I have another baby, how do I know it won’t happen again? But, I became pregnant again when Gian Pablo was only 11 months old. Just 5 months after he’d had his Craniosynostosis operation. I didn’t have time to think about or consider this so that I could decide whether to get pregnant. My other baby was already on its way.

The first question I had for my gynecologist was “Gian Pablo has Craniosynostosis, how do I know if this baby has the same condition? Is there any way to see it in a sonogram?” The answer was NO; you can only see it in the last weeks, and even then only in very severe cases. What calmed my husband and me was seeing Gian Pablo’s rapid recovery and how well his operation went. Only God would know how our next baby would be born. I had to wait, and those nine months of waiting were very long.

When Natalia was born, the first thing I looked at was her head, to see if I could see anything different about it. Everything looked OK and I thanked God, because the baby wouldn’t have to go through this experience. For the first few months, I looked at her head constantly to be sure it was growing well. My experience with Gian Pablo’s Craniosynostosis made me uneasy about other babies’ heads. I can’t help but look at a baby’s head to see if it has some deformity, and if I see one, I ask myself, could it be Craniosynostosis? Should I tell the mother, or would that be bad?

As a mother, I can’t help but wonder why Gian Pablo was born with this and what the cause is. I wonder about the future, and about whether his children will have the condition. All I can do is wait, and hope that with advances in science and the work of the Jorge Posada Foundation, someday we’ll know what causes Craniosynostosis.

What influenced us to choose a pediatric plastic surgeon? By mike and Beth McCormick "Parents of Joe McCormick"

Our son Joe was diagnosed with a sever case of metopic CS two months after he was born in 1998. Despite the obvious emotional turmoil, our focus quickly turned to finding a pediatric plastic surgeon who could “fix the problem”. 

During our search, we were referred to Dr. Frank Vicari at the Children’s Memorial Hospital in Chicago. We were already aware of the wonderful reputation the Children’s Memorial had worldwide but kept an open mind when we walked into the doctor’s office for the meeting. Within ten minutes, we both knew he was the one who would perform the surgery. He had a genuine confidence about him, which convinced us that the man knew what he was talking about, and that everything would be all right. 

We also discovered that he was a professor at the Northwestern University Medical School who had performed thousands of these surgeries, and his reputation within his peer group, both local and national, was nothing short of outstanding. He was the top in his field and our minds were made up that day.

Dr. Vicari has continued his work and has even designed a surgical instrument and a technique that results in less invasive procedures and remarkably short recovery times. We have recommended him to a number of CS families, one of whom even traveled from St. Louis so he could operate on their daughter.

Dr. Vicari is an extremely gifted, intelligent, and dedicated surgeon who fortunately for those diagnosed with CS continues to perform miracles everyday. We are forever grateful to him and the staff at the Children’s Memorial Hospital.

Who will help me? By Henry Medina And Sonia Lloret Bonet "Parents of Ederyk Medina"

This was the question I asked my wife. “Who will help me?”

We knew, after our son was diagnosed,that we’d be facing economic expenses that were beyond my income. Thank God that many doorsopened for us. One of them—the most important and most helpful one—was the Jorge Posada Foundation. Through the Foundation, our son has been able to receive his treatments and surgeries inthe United States. 

In addition to covering the costs of housing and travel, their unconditional support has been a real blessing for us. Today, Ederyk is a completely happy child, and my wife and I are evenhappier. God bless the Posada family and their staff.

We appreciate their strong sense of responsibility, their careful attention and dedication, and their support for these very special children.

Will My Son Survive the Surgery? by Peter and Nina Mottolese

We went into our son’s journey with many fears and questions. Before Peter’s surgery, we met with the team of experts: a neurologist, a craniofacial surgeon and an anesthesiologist. These miracle workers answered and explained in detail what each doctor’s role would be. On the day of Peter’s surgery we could not hold our child close enough, knowing we had to hand him over to these strangers, not knowing if we would see him again. As a mother, my last words to the anesthesiologist when handing him our son while crying uncontrollably was “promise me our son will wake up”. 

As first time parents and a mother who was told she would never bear her own child, it broke our hearts to find out our six month old baby would have to undergo this incredibly complicated surgery. All of our struggles with infertility and our disappointments and heartaches, would never compare to the way we felt knowing our little baby had to endure this journey. 

The Jorge Posada Foundation always had someone to answer our call and provided us with a mentor who was able to answer our questions and calm our fears. Our mentor provided us with a detailed account of his own family’s personal journey. The foundation gave us confidence and provided us with the strength to face our own challenge head on.

How Did I Find Out my Son had Craniosynostosis by Yasmin Moreales Rosa

Nature surprises us, even after all of our technological advances, every day. I am the mother of a six-year old child who was diagnosed with Craniosynostosis. As a mother, I would see him day after day, and I started to notice that his motor skills and his intellectual capacity were not normal for a child his age. Faced with this situation, I set out to find alternatives with which to help my son. 

My son received the necessary resources right away and was diagnosed with Craniosynostosis. The process required an emergency operation to correct his cerebral growth. As a mother, the process has been a long and exhausting experience, but the enthusiasm and joy I get from seeing my son regain, little by little, his quality of life, has been the greatest reward for all of us. I think our society drives us to instill a spirit of independence in our children. I will provide my son with all of the help he needs for his physical, mental and emotional development at every stage of his life. 

The Craniosynostosis diagnosis has helped us to value life even more, and has brought us together as a family. The support group that my son is seeing is exceptional, and we work together, contributing to a society that helps itself and others. I give thanks to God, the doctors that operated on Hector, and the great support group of the Jorge Posada Foundation.