Monday, October 17, 2005

God's Goodness, Research, and the Power of Prayer

We continue to stand in awe and amazement of God's goodness! So far, the total raised from the "One Step Closer" Walk for Leukodystrophy held in Paris, Tennessee, on October 1, is $48,000! This will fund a research project in a big way.

It is so important that the money for research keep coming in. We are in a fight for peoples' lives, and the only way we can win this fight - short of a miracle - is for research to be funded. If we have a breakthrough in MLD, that could open the doors for breakthroughs in other leukodystrophies, such as ALD, PMD, and Krabbe; which would help all of our friends who have MLD - Tucker, Max, Maddie, Sam, Anthony, Matthew, Laura Grace, Lucas, John, Christopher, Jack, Emma, Olivia, Athena, Emily, Maddigan, Cory, Patrick, Justin, Kaitlyn, Sam, Katelyn, and Kendal....the list goes on and on....Our ALD friends - Lorenzo, Lane, and Zach. Families affected by PMD, among whom is our friend, Jansen; and families affected by Krabbe, such as the Gwin family, with their beautiful baby, Ashleigh.

We are currently working on a project to be piloted at UMass, under the direction of Dr. Ed Ginns. Dr. Ginns' research has consisted of other lysosomal storage disorders such as Gaucher's, with success. Please keep this pilot project in your prayers. And since we've mentioned some names above, please mention these - and all the leukodystrophy families - in your prayers, as well.

Someone else who is in need of prayer is our Leukodystrophies Prayer Warrior, Carolyn Wyman. She continually prays for our loved it is time for us to lift her up. The cancer is back; however, God is greater -- He has delivered Carolyn from this so many times, and as long as we will pray, I'm confident He will deliver her again!

May this new week bring you new hopes and new expectations! God Bless!

Tuesday, October 04, 2005

The Walk in Tennessee -- INCREDIBLE!

O my goodness! Never have I seen such an outpouring of love and support! The walk in Paris, Tennessee, was so awesome. Paula went with me, Rhonda went with me, and Gail met us there. There were 750-800 walkers present, and so far, we've raised over $45,000 for MLD research -- from this Walk alone! Isn't that incredible?!?

The Madisons and Wells' are lovely families. Tucker is absolutely beautiful, as is his brother, Davis. We experienced true Southern hospitality the whole time we were there. GG & Bubba had us over on Friday night. We had a fabulous dinner, lovingly prepared by Margaret, GG's best friend. We had the honor of meeting all of their family members and friends who came for the Walk. Jobe and Joy - is your baby here yet? Also on Friday night, we gathered around Tucker and had a prayer time for him. Then we all went back to the hotel, and tried to sleep....for me, not an easy thing to do.

We woke up Saturday, and got ready, and then went to the Eiffel Tower, which was the starting point of the Walk. We were not expecting all the people we saw when we got there! There were so many people, and it was only 7:30 a.m.! By 8:30, the crowd had grown to over 700 people, and I know that more came after the Walk began. How awesome, to see so many people gathered for the purpose of honoring Tucker, raising awareness of MLD, raising funds for MLD research, and glorifying God! He's so awesome, and so deserving of ALL glory and ALL honor!

After the Walk, we were served a wonderful lunch back at the hotel. Thank you to all who so selflessly gave of themselves to make sure we were taken care of. It was such a blessing to be able to meet even more friends and family members of the Wells/Madison bunch. I've come to love you all, and commit to you - again - that I will not stop till a cure is found for MLD! Dinner at the Fresh Market on Saturday night with Angela, Tucker, Davis, Lou, Pam, Gloria, Jimmy, Paula, and Rhonda was so much fun. Sunday was Rhonda's birthday, so the wait staff came and sang to her! She was surprised - and blessed (I think)! :o)

There is so much more I could write...the Walk was awesome. God was, and is, so faithful. Gloria and Jimmy, thank you so very much, from the bottom of my heart!


p.s. Keep praying for Maddie Trimper - she's had a very rough couple of weeks. They will be going to New York the end of this week for some type of transfusion, to help get rid of this mass! Details are on their CB site.