Monday, November 28, 2005

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!

Tuesday, November 08, 2005

Maddie Trimper, My 7-Year-Old Hero

The song playing is "I Run For Life" by Melissa Etheridge. I dedicate this to Maddie, who ran the hardest, bravest race I know. Maddie, we will continue this race, and we will think of you!

My 7-year-old hero is the toughest and the fiestiest little girl I have ever known. I had the privilege of meeting her in person one weekend in May, when I flew to North Carolina and spent the day with my hero and her awesome momma. My 7-year-old hero is Miss Madeline Trimper.

Three years ago, Maddie's brother Max was diagnosed with MLD. Since MLD is a genetic disorder, Jeff and Jane had Maddie and Sam tested, and they too, were diagnosed with MLD. Max received his transplant of umbilical cord blood at University of Minnesota, in January of 2003. In October of 2003, Maddie and Sam were transplanted at Duke. Maddie developed some complications from transplant - an EBV lymphoma in her abdomen....this was a large mass, pressing on her organs, and causing Maddie all kinds of pain.

Maddie had been admitted at Duke several times over the last two years, this last time, they were there from April to August. She got to go home for two weeks or so, and then she was admitted to DeVos Hospital in Michigan. While they were at Duke, cells were taken from Jeff and Jane, and they were sent to New York to be processed, so they could attack this mass.

On Monday, October 10, the Trimpers found out that the cells were ready, and Maddie became well enough to make the flight to New York City. She received three doses of the cells, and we so hoped that this would be the answer to my hero's health complications. But it was not meant to be.

Maddie fought a good fight and finished her race, at 7:15 tonight, 6:15 Central time, passing from this life to her eternal life. She closed her eyes here, and opened them in heaven. She took her last breath here, and her first breath in heaven. She still lives - Jesus said "whoever believes in Me will never die." The Bible says that "To be absent from the body is to be present with the Lord." Maddie lives on....she lives in each of our hearts, until the day we are united with our Lord, and reunited with our - as Carolyn Wyman so eloquently expresses it - Miss Marvelous Maddie Madhatter Miracle Monarch!

Maddie Trimper, I love you.

Jeff, Jane, Max and Sam, JoJo, Jill, Sally, Bob, Claudia, Don and Marcia, and Aunt Cindy, and all the rest of the words are so inadequate at this time...I love you all, and pray that God would wrap His arms around you all, as you lean on Him and each other these next few days, weeks, and months. I will see you soon.

To all the readers, please keep all the Trimpers and Rhodes in your prayers. Their guestbook is locked up right now, due to so many people wanting to post. So please keep checking their site, visit it often, and leave them a note in their guestbook when CaringBridge gets it fixed.