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Welcome to NKH International Family Network | NKH International Family Network

We're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families, all over the world and where it matters the most, in our hearts. Welcome to the International Family Network Website. So please bear with us as we perfect this site and continue to support us as we will support you. If you want to become a member of The NKH International Family Network:. This site still aims t...

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Welcome to NKH International Family Network | NKH International Family Network | nkh-network.org Reviews
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We're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families, all over the world and where it matters the most, in our hearts. Welcome to the International Family Network Website. So please bear with us as we perfect this site and continue to support us as we will support you. If you want to become a member of The NKH International Family Network:. This site still aims t...
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Welcome to NKH International Family Network | NKH International Family Network | nkh-network.org Reviews

https://nkh-network.org

We're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families, all over the world and where it matters the most, in our hearts. Welcome to the International Family Network Website. So please bear with us as we perfect this site and continue to support us as we will support you. If you want to become a member of The NKH International Family Network:. This site still aims t...

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nkh-network.org nkh-network.org
1

User locations | NKH International Family Network

http://www.nkh-network.org/map/user

This map illustrates families around the world who have been affected by NKH. Become a member to get in touch with someone near you. Yellow markers indicate NKH Parents. Black markers indicate NKH Families. Orange markers indicate NKH Friends. NKH Family Network Facebook Group.

2

Support Us | NKH International Family Network

http://www.nkh-network.org/SupportUs

In order to continue moving the NKH International Family Network forward, it is important that we raise funds to support our needs. If you or your relatives would like to donate some money - or even a gift card to an office supply store - you are more than welcome. Perhaps you want to follow Karens example: She and her husband did a big party for Jennifer's 16th Birthday and the invitation read: in lieu of gifts, Jennifer asks that you make a donation to the NKH Family Network. Attentions : Allison Haley.

3

What is Nonketotic hyperglycinemia (NKH) | NKH International Family Network

http://www.nkh-network.org/whatisnkh

You will see many descriptions of what NKH is and how it effects our children and sadly they all make for pretty hard reading. However, the experiences of those who treat it and those who live with it are slightly different. As such, we have tried to present you with a balanced view and below are three different descriptions of NKH. The first is from Wikipedia. The second is from Dr Johan Van Hove. With the classical, or neonatal presentation of glycine encephalopathy, the infant is born after an unremar...

4

OurStory | NKH International Family Network

http://www.nkh-network.org/OurStory

It all started with a mom. Mary Lou Chandler's life with NKH started much the same as most. Her beautiful son Jaime was diagnosed with Nonketotic Hyperglycinemia. "He will live 6 months to 1 year, he will start having seizures and then he will die and that there were no other children living with this terrible disorder.". That is when she started searching for other families. While at a doctor’s appointment. Mary Lou wrote a letter to the magazine who forwarded it to Karen Carter and her daughter. In...

5

NKHIFN | NKH International Family Network

http://www.nkh-network.org/nkhifn

NKH International Family Network's goal is to connect families, and provide support and knowledge to anyone affected by the metabolic condition Non Ketotic Hyperglycinemia or Glycine Encephalopathy, as it is also referred to. This website, whilst still under construction and in its infancy, intends to eventually offer several vital tools for families in all aspects of dealing with an NKH diagnosis, regardless of outcome or severity. If you want to become a member of The NKH International Family Network:.

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sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: June 2010

http://sophiagrace2010.blogspot.com/2010_06_01_archive.html

Wednesday, June 16, 2010. They want to know all the details of Heaven. Is there cribs, a mommy and a daddy to take care of them, do they eat baby food? So many questions. Today on the way over to our friends house the song Twinkle, Twinkle came on our iPhone. Emma wanted to know if Sophia would hear her if she sang it in the car. I told her that of course she would and her and Shawn continued to sing the song four times just to make sure. What are we supposed to learn from our experiences?

sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: March 2011

http://sophiagrace2010.blogspot.com/2011_03_01_archive.html

Tuesday, March 15, 2011. To our family and friends:. On this eve of Sophia Grace’s first birthday (yes we do celebrate them! For $70,000 per year, a very small sum in research terms, we have the power to free up the only researcher in the world dedicated to helping our children. Please help us help him by attending our first annual Hope for NKH auction, April 2nd, 2011 at 5:30pm. Come join us for dinner (Olive Garden, yummy! And pick up a few items you won’t want to miss out on! Subscribe to: Posts (Atom).

graciecook.blogspot.com graciecook.blogspot.com

Gracie's Journey: December 2011

http://graciecook.blogspot.com/2011_12_01_archive.html

On October 23, 2010, our precious angel Grace passed away from a rare seizure disorder called Early Myoclonic Epileptic Encephalopathy (EMEE). We hope to share her story and the challenges we face as a family through this blog. So please join us as we set out on Gracie’s Journey. Friday, December 30, 2011. A New Lead and New Hope for 2012. Posted by Brien Cook. Saturday, December 24, 2011. At this time last year Grace had been gone for 2-months. We were kind of just going through the motions of Chris...

sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: October 2010

http://sophiagrace2010.blogspot.com/2010_10_01_archive.html

Monday, October 4, 2010. Our sweet JoJo's birthday. Subscribe to: Posts (Atom). We've created this site so that our family and friends can stay updated on our journey with Sophia Grace. Mommy, Grammie, and Auntie will be posting about their journey. We would like to thank everyone for their love, support, and prayers. Photos by Trina Gueck. Now I lay me down to sleep. Our sweet JoJos birthday.

sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: January 2010

http://sophiagrace2010.blogspot.com/2010_01_01_archive.html

Thursday, January 28, 2010. An amazing woman that I met through tragedy years ago reminded me that I once sent her this poem that I found. Is one who feels deeply. Is both soft and powerful. Is a gift to all the world. You are a woman who shows. What it takes to be one. Tuesday, January 26, 2010. Your big sister emma. Friday, January 22, 2010. Where has time gone? How will it affect our living children? How will it affect our family and friends? How will it affect our relationship? Photos by Trina Gueck.

sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: Hope for NKH Auction

http://sophiagrace2010.blogspot.com/2010/12/hope-for-nkh-auction.html

Sunday, December 19, 2010. Hope for NKH Auction. We love you JoJo and SoSo. Subscribe to: Post Comments (Atom). We've created this site so that our family and friends can stay updated on our journey with Sophia Grace. Mommy, Grammie, and Auntie will be posting about their journey. We would like to thank everyone for their love, support, and prayers. Photos by Trina Gueck. Now I lay me down to sleep. Hope for NKH Auction.

sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: February 2010

http://sophiagrace2010.blogspot.com/2010_02_01_archive.html

Monday, February 22, 2010. One of our greatest concerns is for the other children. How will they all handle this? Ari is also talking about Sophia, but she also wants to know when JoJo can come down from Heaven to play. We only have 3 weeks left as of Tuesday. This time has gone by so fast. I just wish that I could keep her in there until kindergarten, maybe the doctors would know more by then. Thursday, February 18, 2010. Subscribe to: Posts (Atom). Photos by Trina Gueck. Now I lay me down to sleep.

sophiagrace2010.blogspot.com sophiagrace2010.blogspot.com

Sophia Grace: March 2010

http://sophiagrace2010.blogspot.com/2010_03_01_archive.html

Tuesday, March 30, 2010. Our sweet Sophia would be turning 2 weeks old. There are some minutes and hours where I forget that I gave birth to her just 2 short weeks ago. It already seems like an eternity since I was able to hold her in my arms and smell her sweet baby smell. Her 6 birth-days she spent on earth went way to quickly. Monday, March 29, 2010. Pictures from Trina (NILMDTS). Pictures from Trina (NILMDTS). After Sophia Grace-Day 7. Friday, March 26, 2010. Tax-deductible donations can be made to:.

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ZUSAMMEN SIND WIR STARK! Bei der nicht-ketotischen Hyperglycinämie (NKH), handelt es sich um eine sehr seltene Stoffwechselerkrankung (1:60:000 Geburten). Die meisten Erkrankten versterben in den ersten Lebenswochen. Die, die überleben sind meist körperlich und geistig schwerst behindert, wobei es auch extrem selten eine schwache oder nur vorübergehende (transiente) Form der NKH gibt. Damit soll das Glycin im Blut gebunden werden. In der Theorie führt ein niedriger Glycin Spiegel im Serum zu einem ni...

nkh-network.info nkh-network.info

Welcome to NKH International Family Network | NKH International Family Network

We're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families, all over the world and where it matters the most, in our hearts. Welcome to the International Family Network Website. So please bear with us as we perfect this site and continue to support us as we will support you. If you want to become a member of The NKH International Family Network:. This site still aims t...

nkh-network.org nkh-network.org

Welcome to NKH International Family Network | NKH International Family Network

We're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families, all over the world and where it matters the most, in our hearts. Welcome to the International Family Network Website. So please bear with us as we perfect this site and continue to support us as we will support you. If you want to become a member of The NKH International Family Network:. This site still aims t...

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