Last fall when our grandson was just a few months old, my daughter-in-law Whitney worked with the EB folks and arranged for us to run/walk in the Cowtown Marathon for EB awareness and fundraising for research. I signed up even though I had never done anything like this. Because I’ve been so busy there was no time to get ready and the most I ever walk is a mile. I was not prepared as I went last Saturday, and a little bit scared if I could make it 3.2 miles and really began to wonder as we started that first few minutes uphill, but the further I walked the better it felt and the more fun I had.
We raised over $10,000 for EB research. You ask what is EB. It is the worst disease you have never heard of, and it is a horrible skin disease and our grandson, Colt was born with it last August. We are still waiting on gene test results to know just how bad his is, but have been so blessed because he has not had the typical EB issues. So far only his feet and mouth have been affected for the most part – with him being born with no skin on his feet and blisters under his nails and a few on the feet and hands. Unlike most EB children, we can do just about anything with him, but it was several weeks before we were able to touch him like we yearned to or hold him as he was in intensive care,and they did not know how bad his disease was. Here is a picture of him last Saturday before the race. His mom pulled off his shoes for those of us there at the race. One of my group members commented about his “miracle feet” because they truly are a miracle from God to look back when he was born and see where he is today.
Here are a few of the pictures from the weekend.
Four OBS Sisters I was blessed to have friends join me from my Bible Study Group 31 of Proverbs31.Org Online Bible studies. Three of them came to support me and Colt and his family and gave of their time and monies to help us fight for a cure.rs
It’s not too late to donate for research. Here is a link. I hope you will prayerfully considering giving to EB.
I would like to thank the following friends that I saw on the EB page tonight that had donated and also my special friends Sally Partida Phillips, Melissa Nagengast and Loretta Kostyo who came and walked with me: