|
Welcome to Lance's page.
It has been provided to keep people updated
about Lance's fight against Menkes Syndrome.
Lance was born on March 9, 2000.
On June 17, 2000, we found out
he had Menkes Syndrome.We were told he would only live three months. Lance had other plans... By the grace of God and his determination to live, he is still here six years later. Lance is such a special little boy. He has touched everyone who has ever met him. He is an inspiration to everyone around him.
Life has not been what we imagined it would
be but we would not change a thing.
Lance is truly a gift from God.
"I would rather have had 30 seconds
of wonderful,
than a lifetime of nothing special."
 
ANGEL GM
CLICK HERE
What is Menkes Syndrome,you ask? Here is my definition: A pointless, horrible disease that has forever changed my life. The medical definition: Menkes syndrome is inherited as an X-linked recessive disorder. The disorder is related to deficient levels of copper availability to cells. Symptoms include progressive mental deterioration, kinked, twisted and brittle hair, as well as skeletal changes.
Death usually occurs in the first few years of life.
About 1 in 300,000 individuals are affected.
Yes, Lance is 1 in 300,000, can you believe that?
CLICK HERE
Journal
Wednesday, November 19, 2008 8AM Another menkes child. He was 6 just like Lance.
I miss Lance terribly. I have such an ache in my heart.
I'd be lying if I said I was not relieved that it's over though. I don't have to worry anymore if he is going to die while I'm sleeping or die when I'm not there. I'm so glad for that part because it was horrible all the not knowing.
Just thinking about it stresses me beyond words.
Tina
Read Journal History
Hospital Information: Home
Links: http://caringbridge.org/cb/inputSiteName.do?method=search&siteName=babywesley Wesley
http://www.friendsofalex.org Alex
http://quiltsoflove.com/quilt_2004/lance_DL/lance_DL.html Lance's quilt
|
|
