Grieving for Maddie, Lane, and Laramie
After losing Maddie Trimper on November 7, to MLD and EBV, we lost Lane Hancock to ALD on November 10. Then just last week, we lost Laramie Moyer to MLD! How my heart breaks for these families. We have just got to find a cure for these insidious diseases. There are so many of them....even unnamed leukodystrophies....a cure must be found, and quickly!
I am working with a doctor at UMass, to pilot a research program into lysosomal storage disorders. I will soon post his proposal, and then I will be asking for your help to fund it. We've got to do this. So many lives are depending on us!
I'm working on a huge - and I do mean HUGE - fundraiser. I'm so excited about it, and can't wait to share details....which I will do, as soon as I have them in place. I'm also trying to plan a "One Step Closer" Walk for Leukodystrophy in Michigan, and actually two in California. These are in the planning stages, so everything is kind of "sketchy" right now....I will post details as they become available.
We just got a new shipment in of the "One Step Closer to a Cure" wristbands. If you haven't gotten yours yet, they are available for $5 each, plus $1 shipping (for up to five bracelets) through The Stennis Foundation. Just send your check for however many bracelets you want, plus the appropriate amount for shipping, to:
The Stennis Foundation
PO Box 30065
Amarillo, TX 79120
Please keep the Trimpers, the Hancocks, and the Moyers in your prayers. And as always, pray for all our Leukodystrophy families. Have a good week!
God Bless!
posted by Trish @ 4:34 PM
1 Comments:
Hello, I am Lane's cousin David. He was my best friend. I really wish there was something i personally could do to help. With the ALD there was no known reason in our families genes for Lane to get it. It has traditionally been traced back through the females of the family (which are the carriers), and manifested in the males. Before Lane, there were no cases in our family. Stem cell transplantation actually helped Lane and took away the ALD, but with such a weak immune system, he couldnt fight off colds, flus, and what finally took him pneumonia. In future cases, i hope doctors and nurses are better prepared to cater to the needs of these sensitive immune systems.
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