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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
Friday, June 27, 2008 10:45PM Lance,
Yesterday, I went to see your friend Isaiah in the hospital. It was my first time back to Hopkins since you died. I told myself every step of the way that you didn't die in all areas of the hospital and I was able to make it through. As I went to get on the elevator, there was a memorial quilt hanging up and it had your name on it. It was the first name I saw.
Cassidy looks at your picture now and says "That my brother". I am glad I was able to have her before you died. She really made a difference in your life and you will make one in hers.
Has it really been 18 months since you left me? I swear I can still feel you in my arms.
Mommy
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
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