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| Name: |
Waterholic
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| Subject: |
please help
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Date:
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9/4/2008 1:41:25 PM
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Hello all,
I got this request from my sister. Please pass it on. Hopefully we can all find some help and comfort for this family!
Hi Everyone,
I hope all is well. I am passing this on for a friend of mine who is desperate for some answers. She recently gave birth to a son that has a rare genetic disorder. There are only 50 confirmed cases of this in the U.S. and she would like to get this out to as many people as possible in hopes to get in touch with someone who is dealing with this as well. I am not a fan of forwards but this one serves a very important purpose. Please pass this on to people you know near and far.
I sure would appreciate it and she will too.
God bless,
Nicky McCoskey :)
----- Original Message -----
From: Roger & Traci Estes
Sent: Friday, August 29, 2008 10:54 AM
Subject: Prayer Request for Thomas Henry Estes (From Traci Patterson)
Most of you probably know our little guy, Thomas Henry Estes, was born 7/30/08, six weeks early. He spent two weeks in the NICU and has been home 2 weeks now. He weighed 4 lbs 10oz at birth and we are happy to report he is doing well and has gained an entire pound now. However, we have a prayer request for him.
We received confirmation yesterday that he has an extremely rare metabolic genetic disease called Carnitine Palmitoyl Transferase Deficiency 1, otherwise known as CPT1. This is a muscle wasting-type disease. His body is unable to process 2 proteins. This disease affects all of his muscles. As you all know, our hearts are muscles and mine heart is broken right now.
Roger and I are both carriers of this recessive gene, which therefore gives our children a 25% chance of getting this. The odds of 2 people coming together who both have this recessive gene and having children just doesn't happen. We will be seeing a genetic doctor at Riley Hospital next week, at which time I can pass more information on to everyone.
Please pray for our little guy and please pass this email on to anyone and everyone you know. Perhaps it will somehow reach another parent whose child has this disease so we can learn more about it.
Roger & Traci
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| Name: |
BDGRIFF
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| Subject: |
NIMD
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Date:
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9/4/2008 2:57:15 PM
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Climb National Information Centre for Metabolic Diseases.
Not sure if this might help but they, also have parent to parent forums. I really hope this will be helpfull to you.
URL: climb.org.uk/
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| Name: |
Waterholic
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| Subject: |
NIMD
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Date:
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9/4/2008 3:28:11 PM
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BDGRIFF, thanks for the info. I have passed it on.
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| Name: |
BDGRIFF
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| Subject: |
NIMD
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Date:
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9/4/2008 3:39:36 PM
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Your welcome. Hope it helps. The little man is in my families prayers
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| Name: |
MartiniMan
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| Subject: |
please help
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Date:
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9/4/2008 5:27:04 PM
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On it!
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| Name: |
BDGRIFF
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| Subject: |
please help
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Date:
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9/4/2008 5:48:11 PM
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Here is another web site with some good information for your family.
GOD BLESS!
URL: newbornscreening.info/Parents/fattyaciddisorders/CPT1.html
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| Name: |
Waterholic
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| Subject: |
please help
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Date:
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9/4/2008 6:57:32 PM
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I sure appreciate everyone's help. God bless.
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