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Five Minute Friday – I Wish It Were Finished

Colt - Cowtown - 2-22-14

Last August our first grandson was born with the most horrible disease you have ever heard of.  Here are a few of the awful facts:

EB Basics

 It was so scary – so scary that the pediatrician and the doctors at a large hospital did not know what was wrong when Colt was born without skin on his feet.   So scary that our son and daughter-in-law kept things inside so as not to worry us parents, and not telling us the terrible facts that this could take his life or that we might never be able to hold him.

They transferred little Colt within hours after his birth, and even that was scary because the pediatrician and neonataloist at the big hospital where he was born, did not know what was wrong. As my husband and I drove to Cook’s Children Hospital I told him what we need to pray for is a doctor that will know what this is.

colt  transportation colt transport2colt - 1 weekOur prayers were answered as we arrived and a doctor sit down with my husband and I to explain what they know about the disease, but not all the really hard stuff – just basics.  For about a week we could only easily touch him with a finger because rubbing, friction, clothes and all sorts of things could take off his skin. Finally after a week when they saw it was not the worst forms of EB,  they let me hold him for just a moment, one of the most precious moments in my life.  For some EB babies they can not be held because their skin peels off and that’s why they are called butterfly babies..

.Colt and wendy and I and Whitney

They made a facebook page – Pray for Baby Colt, and today it seldom has a post because he is doing so well and maybe that page will be “finished” one day as Colt and God continue to beat this disease.

Colt was born with no skin on his feet, sores on his little hands and sores in his mouth.  There are different types of EB and his is one that mostly affects the feet and esophagus.  Unlike most EB children, we can do just about anything with him.,

In February some of us ran and some of us walked to raise EB awareness and that’s my goal here today for you to learn a bit about this disease.  Our group raised with many friends help over $10,000 for EB research.

That picture at the top of the page is him before the race.  His mom pulled off his shoes for our friends to see his little feet.  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.

Cowtown-Group pictureCowtown-Us                               Four of my Bible Study 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.

Cowtown - BacksBacks of our shirts with the Colt signs that our friend Sally brought for us.  END EB!

Colt with his Mom and Dad!          Cowtown-Mix, Whitney and Colt a

We raised over $10,000 for EB research, but we also brought awareness to people in the race about EB as they would walk by us or run by us and ask about it.

It’s not too late to donate for research.  Here is a link that was set up when we ran for Colt.  I hope you will prayerfully considering giving to EB and it all goes to research, and you can see a picture here of how bad Colt’s feet were.

http://support.childrenscancer.org/site/TR?pg=fund&fr_id=1180&pxfid=7580

I wish EB was “finished”.  I wish there were a cure, but I praise God that Colt is doing well.  He has skin on his feet.  He is not getting big blisters in his mouth.  We still see a few sitbacks with him goughing his feet – but God has worked miracles in his life and ours.  If you will would you add Colt to your prayer list?  Here he is today.  Is he not precious?colt baseball

 

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7 thoughts on “Five Minute Friday – I Wish It Were Finished”

  1. Shalom sister I am visiting you from fmf and I am blessed at what God is doing through your livez to raise awareness. I pray that baby Colt will grow up strong and healthy and that Gods miracle of abundant life will be a testimony in His life! May God bless and keep you all. Aliyah (www.setapartwarrior.blogspot.com)

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  2. OH, we have had our own moments with strange diseases. I know the wish in my heart for a finish. You are in my prayers and so is Colt. I have found that raising awareness is a really big part of all this. When people understand, they are more compassionate and caring. May he grow up to be amazing!

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