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Progeria - This Child will Break your Heart

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posted on May, 28 2006 @ 06:49 AM
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This is Lindsay...



She was diagnosed with Progeria when only five months old.



WHAT IS PROGERIA?
Hutchinson-Gilford Progeria Syndrome (“Progeria”, or “HGPS”) is a rare, fatal genetic condition
characterized by an appearance of accelerated aging in children. Its name is derived from the Greek and
means "prematurely old." While there are different forms of Progeria∗, the classic type is Hutchinson-
Gilford Progeria Syndrome, which was named after the doctors who first described it in England; in
1886 by Dr. Jonathan Hutchinson and in 1897 by Dr. Hastings Gilford.
HOW COMMON IS PROGERIA?
Progeria has a reported incidence of about 1 in 4 - 8 million newborns. It affects both sexes equally and
all races. In the past 15 years, children with Progeria have been reported all over the world, including in
Algeria, Argentina, Australia, Austria, Canada, China, Cuba, England, France, Germany, Israel, Italy,
Mexico, the Netherlands, Poland, Puerto Rico, South Africa, South America, South Korea, Switzerland,
Turkey, the US, Venezuela, Vietnam and Yugoslavia.
WHAT ARE THE FEATURES OF PROGERIA?
Although they are born looking healthy, children with Progeria begin to display many characteristics of
accelerated aging at around 18-24 months of age. Progeria signs include growth failure, loss of body fat
and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis,
cardiovascular (heart) disease and stroke. The children have a remarkably similar appearance, despite
differing ethnic backgrounds. Children with Progeria die of atherosclerosis (heart disease) at an
average age of thirteen years (with a range of about 8 – 21 years).

www.progeriaresearch.org...


I watched her story on television yesterday and was simply amazed. Every day this child wakes up completely stiff, and requires constant massage from her mother to be able to maneuver.

Progeria has caused this little girl to look like an old lady. Balding, stiffness, weight loss, etc. Blue veins can be viewed all over her skull, probably one of the most obvious features that I had noticed when watching the clip.

When she walks you can notice how stiff she is, but the smile on her face really takes away from everything else. She was always jumping up and down and smiling with her Detroit Pistons jersey on.




She loves shooting baskets and watching the Detroit Pistons play basketball. If asked, she will tell you her favorite player is SHEED. She is a tremendous blessing.


Watching this child enjoy every moment will put a smile on your face. You can visit her site www.littlelindsay.com to see more images of her.




posted on May, 29 2006 @ 03:02 AM
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As a mom who lost a child to birth defects, stories such as that one really touch my heart. I'd known about progeria from the occasional case that made the news. The actor, Mickey Hayes, who played the alien in the movie, "The Aurora Story" was actually a boy with progeria who died shortly after the film was finished.

www.peterbrown.tv...

The Progeria educational website is run by a volunteer who saw (on Jerry Springer, of all places) a child with progeria and went to search for information and became so frustrated at the lack of information that he created a site for it
www.hgps.net...

It's estimated that about 100 children worldwide suffer from this. The gene that creates the problem has been identified, but research goes slowly simply because there's not vast amounts of money to support the research.

More about this disease can be found here:
www.genome.gov...



posted on May, 29 2006 @ 04:01 AM
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What a gutwrenching feeling i get when i see this happening to little kids.


Its very sad. I wonder why these things happen, they're so smart and far beyond their years. They fully understand they have a problem and God bless the parents of these children.
God's chosen ones have full compassion and they cope daily. God bless them.

Byrd, i am truly sorry for your loss.



posted on Jun, 20 2006 @ 05:50 PM
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As rare as some of these diseases are, it seems their stories are common.

Individuals like this deserve the exposure, so the ignorant who victimize themselves over sour grapes realize how little their problems really are. A child in this position, or their parents, who can wake up every morning with a smile on their face is a blessing. How could you raise a child that has no future? How could you look your child in the eyes and not know if you will have the opportunity tomorrow?

The strength these parents display is extraordinary.



posted on Jun, 20 2006 @ 06:37 PM
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Originally posted by chissler
As rare as some of these diseases are, it seems their stories are common.

Individuals like this deserve the exposure, so the ignorant who victimize themselves over sour grapes realize how little their problems really are. A child in this position, or their parents, who can wake up every morning with a smile on their face is a blessing. How could you raise a child that has no future? How could you look your child in the eyes and not know if you will have the opportunity tomorrow?

The strength these parents display is extraordinary.


My baby brother died at 22 from a very rare as well. It will be 2 years tommorrow. (feels like yesterday, yet seems like it can't be possible that it really happened.)
The sad thing about rare diseas is that docotrs can't do anything to help them, all they want to do isuse the child as a pin cushion and experiment. We know they need to try to understand new disease and rare disease... but when you have a child that will die very young and will live a life of pain - it's hard to let them go through all that. Especialy when the tests are painful ones.
And worse... the doctors won't listen to them and poo-poo thier symptoms and try to exclude them becuase they 'aren't on the list of symptoms' . Sometimes, like with us, it's not untill they have dies that the doctor will admit he was wrong.



posted on Jun, 20 2006 @ 06:48 PM
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Rare diseases is something that I have never come across in my family, but I have lost people who were very close to me.

So I can understand the loss of a loved one, and words can not describe it. This past April was the 3 year anniversary of my step-fathers death.

When you speak of the experiments on your brother, I can not imagine the suffering he and your family had to go through for this. The disease enough would be almost unbearable, let alone having to go through this. You can only hope that what he went through has saved a life already, and will continue to save more in the future. Its the sacrifices we make today that could change a life for tomorrow.



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