Say a little prayer for little Georgie

I don’t know how much many of you know about Jorge Posada’s son Jorge Luis and his seven year life long battle with craniosynostosis but I was reading this really excellent and emotional article that was recently published in the New York Newsday about it and it’s been on my mind a lot in the last 24 hours or so…
For those of you who are not already aware of it George’s son Jorge Luis Posada suffers from craniosynostosis,which he was diagnosed with 10 days after he was born, and has endured
numerous surgeries to correct the condition.
Logo_jpf Posada established the Jorge Posada Foundation on his website to help find a cure for the disease and support families with children affected by the condition.
Craniosynostosis is a birth defect of the brain characterized by the premature closure of one or more of the fibrous joints between the bones of the skull (called the cranial sutures)
before brain growth is complete.
Closure of a single suture is most
common. The abnormally shaped skull that results is due to the brain
not being able to grow in its natural shape because of the closure.
Instead it compensates with growth in areas of the skull where the
cranial sutures have not yet closed. The condition can be gene-linked,
or caused by metabolic diseases, such as rickets or an overactive
thyroid. Some cases Jlposada
are associated with other disorders such as microcephaly (abnormally small head) and hydrocephalus
(excessive accumulation of cerebrospinal fluid in the brain). The first
sign of craniosynostosis is an abnormally shaped skull. Other features
can include signs of increased intracranial pressure, developmental
delays, or mental retardation, which are caused by constriction of the
growing brain. Seizures and blindness may also occur.
Treatment
for craniosynostosis generally consists of surgery to relieve pressure
on the brain and the cranial nerves. For some children with less severe
problems, cranial molds can reshape the skull to accommodate brain
growth and improve the appearance of the head.The
prognosis for craniosynostosis varies depending on whether single or
multiple cranial sutures are involved or other abnormalities are
present. The prognosis is better for those with single suture
involvement and no associated abnormalities.

Jorge_posada_and_son
The
NINDS conducts and supports a wide range of studies that explore the
complex mechanisms of early neurological development. The knowledge
gained from these fundamental studies provides the foundation for
understanding how this process can go awry and offers hope for new ways
to treat and prevent brain birth defects, including craniosynostosis.
I’m sure that we all have fond memories of little Jorge coming to the All Star games with his dad and running out onto the field with his dad in his own little Yankees uniform.
I remember him with his own little Yankees hat and his eye black running out onto the field when he heard Jorge’s name called and just running about all willy nilly until he was finally picked up and carted off of the field.
I can’t find my pictures right now but I did had some photos of him running circles around Pedro Martinez giggling at him and watching Manny pick him and carry him around.
He was such an adorable toddler then and he’s such and adorable little guy now.
He doesn’t deserve to have to suffer like he’s suffering right now.
No child does.
It’s so sad and I ask anybody who reads this who has a few extra bucks to spare this week to drop by the Jorge Posada Foundation website and for any of you who believe in the power of prayer or positive thoughts to send some to Jorge, Jorge Junior, his beautiful wife Laura, and their little daughter Paulina.
I’m hoping, along with everybody else, that this latest surgery for Georgie Junior is his last and that he’s able to play and run and be happy like all children should and won’t have to endure any more of this madness.
Here is a new article that was published in New York Newsday that details the current status of the situation:

 
                              

 

Little Jorge Posada catches a break

BY KAT O’BRIEN
kat.obrien@newsday.com

June 17, 2007

Jorge Posada and his wife, Laura, could only wait while their son,
Jorge Luis, had surgery this past December. He had just turned 7 years
old, yet this was his eighth operation to treat a congenital birth
defect, craniosynostosis.

The Posadas waited anxiously for six, eight, 10 hours while the boy’s
skull was being taken apart so the bones in it could be reshaped and
reassembled to give him a normal-shaped skull.

"I was brave," Jorge Luis said. "I was a little bit scared, though."

Perhaps, his parents prayed, this surgery would finally grant their
wish and give their son a normal life. Perhaps, they dreamed, they
could take Jorge Luis home and not have to put him through any more
operations. Perhaps, they hoped, he would be healthy and happy and no
one would ridicule him for having a funny-shaped head.

"We are praying that that was the last one, the last big operation,"
said Posada, the Yankees catcher. "The way Dr. Staffenberg described
it, he said he was going to do everything possible to make sure that
that was the last big operation. It was tough times."

Craniosynostosis affects approximately one in 5,000 babies, said
Staffenberg, the surgical director at the Center for Craniofacial
Disorders at The Children’s Hospital at Montefiore in the Bronx.
Craniosynostosis is sometimes hereditary, though not in Jorge Luis’
case. It is characterized by the premature closure of one or more
fibrous joints, or sutures, keeping the brain and skull from growing
properly. It can generally be corrected with one operation.

Jorge Luis was an exception.

Jorge Luis’ skull remained asymmetrical, his neck tilted to one side,
his left eye socket was out of line, and one-third of his skull bone
was missing — leaving his brain unprotected in case of a fall or bump
on the head. Said his father: "If he bumped his head on the corner of
the table, it could be really severe."

The reactions of others put his parents in anguish. Laura recalled one
particularly cruel afternoon, when her husband was on deck at Fenway
Park and a fan called out that Posada’s son "looked like he was
retarded."

After Jorge Luis’ latest operation, they should never hear comments
like that again. Staffenberg split a portion of the skull bone in two,
and used the newly divided piece to cover the unprotected portion of
his brain. He also removed previously inserted plates and pins, and
plastic surgery covered up the scars.

"I’ve got to say, things look really fantastic now," Staffenberg said,
"and everyone is really pleased with how well he’s done … Both mom
and dad were in the intensive care unit all the way through the
weekend. Dad helped me change the bandage. Dad helped me take about 200
stitches out of Junior’s scalp. They were both just extraordinary."

It has been a long journey since Jorge Luis was diagnosed with
craniosynostosis days after his birth Nov. 28, 1999. His parents met
while Laura was working both as a lawyer and on a Puerto Rican TV
show. After one show, she and some friends went to a lounge. That’s
where she met Jorge, who told his friend, "I’m going to marry that
girl." They got married a few months later and they soon had a new baby
on the way. "You get your first child, your first-born, and you hope
that everything’s good, and it wasn’t," Posada said.

Laura said: "Your world crumbles, and you’re upset, and you’re ignorant
about this condition. The worst thing is that it’s beyond your control."

Jorge Luis had his first surgery at 7 months old, and the next soon
after. "You get nervous," Posada said. "You cry at night the night
before. The first two operations were during the season, and I wasn’t
here for pretty much 10 days. I played, but I wasn’t here ."

In the fall of 2000, the Jorge Posada Foundation was created to raise
awareness of craniosynostosis and funds for research and treatment. He
had already wanted to begin a foundation and said his son’s condition
"was like a sign from heaven."

When Laura’s not with Jorge Luis and their 41/2-year-old daughter
Paulina, she’s running the foundation. On Monday, they hosted the
Heroes for Hope Gala at the Pierre Hotel in Manhattan. About a dozen
Yankees attended. The dinner and auction raised more than $680,000,
doubling last year’s total.

Jorge Luis was the night’s star when he welcomed the guests, greeted by
a hearty ovation. With their son’s health problems, they hope, behind
them, the Posadas can just be a family. Perhaps not surprisingly,
Posada is having a career-best season, batting .354 with 41 RBIs in 59
games entering Friday. "That’s why Jorge is having the year that he’s
having," Laura said, "because we can relax and breathe, and not worry.
We can look at [Jorge Luis], and he’s so smart and normal and healthy.
For the first time, we can enjoy it, and not have people stare at him."

No more thoughts of hospitals and needles and pain. Jorge Luis, who was
playing on the field before Friday’s game at Yankee Stadium, is
otherwise occupied, saying: "I like to play with my friends, and play
video games, and color and play baseball."

Happy times.

Copyright 2007 Newsday Inc.

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9 comments

  1. amber__11@hotmail.com

    What a great article. I have followed the story for years now and I cant imagine all things they have gone through. It makes me mad to read that people would actually make fun of a sick child. I hope this is the last surgery and he can begin to have a normal life.

  2. Jason

    I read this yesterday as well, and it was heart-wrenching, particularly on Father’s Day. My close friend Frank the Sage’s daughter had the same condition, and thankfully one major surgery (during the 1998 World Series) solved her condition that she had since birth. I really respect Jorge and his family for the way they’ve handled this difficult condition and all the surgeries, and for the hard work they’ve put into raising money for awareness, research and treatment. Yet another reason to revere Jorge.
    http://heartlandpinstripes.mlblogs.com/

  3. Michael

    I don’t have any children so I can only imagine what it must be like for the Posada’s or any other family in the face of such events.
    I have always had a tremendous amount of respect for Jorge in the way that he has always maintained a strong relationship with his family and children and seems so grounded.

    He knows that as much as we all love baseball that he does have a life outside of baseball now and will go home to that life in a few short years to a beautiful wife and two beautiful children.

    Really a great guy and I wish them all the best.

  4. Michael

    I also don’t know how in the world any fan could have it within themselves to make fun of a child with health problems.
    I read an article about Orlando Cabrera a few weeks back saying how mean and awful that the New York Yankees fans are and how wonderful and great both the Angels fans and the Boston Red Sox fans are.

    I’m not going to denegrate any other team’s fan base — especially at the expense of a few rude people that ruin it for the entire group…

    But my point would be that there are rude fans in any large group just like if you were to go out and start grabbing a few thousand people off of the street at random.

    The chances are that they’d be a few rude a-holes in the bunch.

    That’s not to say all people are jerks or that all Angels fans, or all Yankees fans, or all Red Sox fans are rude — just that it would probably be next to impossible to gather 30 thousand people in one place and not get at least a few clowns there in the group.

  5. hira.nawaz@live.com

    Lots of prayers for lil Georgie
    My 5 weeks old son also diagnosed with premature closure of skull bones.
    its so hard to accept this.we were hoping to avoid surgery.
    But according to doctor only solution is surgery…

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