This Public Service Announcement will air on Discovery Health in June for the EB Patient Care Conference and again in October for EB Awareness Month. It's very well done.
And Jonah makes an appearance at the nine second mark, on the left. We had no idea he was in it until we just now watched it...
I also wanted to mention that we lost another JEB baby this week. His name was Owen, and he was only five weeks old. Courtney wrote about him here and here. He was actually born at the same hospital Tripp goes to, and Courtney had the honor of meeting him and his parents. He got a blood infection and just couldn't overcome it.
We are desperate for a cure. How many more will we lose before we get our miracle?
Thank God Owen is pain free now. Completely restored and PERFECT!
9 comments:
When the little boy got choked up saying how it was hard to live with EB, I got choked up and promptly went to the side of your page and bought a magnet. Hoping that they find a cure!
This is really well done - I don't think people understand the magnitude of EB (if they even know about it at all). I'm including myself in those "people!"
I was just talking to Caroline about you today (was telling her about Gabe and trying not to cry). One of the things I told her was that EB is not just a bunch of little blisters that come up and go away. It's very painful and horrible, inside and out.
Continuing to pray for a cure, and that sweet Jonah will be healed. You and Matt are in my prayers, especially these last few days. What you wrote for Gabe is beautiful.
Love,
Laura
This makes me so sad. :(
I'm so glad to see things like this that will get the word out about EB. I've spoken about your family to others, and they've never even heard of this disease. It's heartbreaking that families like yours and Tripp's and others have to see their children in daily pain...I just can't imagine. Patrice, I pray for you often, and adore your sweet Jonah. I just read your letter to Gabe below, and it was truly beautiful. You wrote so eloquently, and my tears were flowing.
Hi there,
I have been reading your blog for quite sometime now. After reading your letter to Gabe, I wanted to leave you a note telling you that letter was one of the most BEAUTIFUL things I have ever read. {aside from the Bible}
Thank you for sharing that with me/us. God Bless you on your journey.
It is SO important to educate the public about EB. I have shared your story with many, many people and they (like myself) had never heard of it before. Knowledge is power! And power gets things done. Prayers for knowledge and power to cure EB!
Love, Janet
When little Zach choked up talking about how hard it was to have EB the tears began falling down my own cheeks.
Every morning we pray for a cure for EB. Every morning we pay that Jonah has an outstanding day!
I hope this PSA brings a lot of awareness to this horrible diease and funding is the result which then will lead to a cure!! Praying.
This was a really great post. (You are a very talented writer and little Gabe and Jonah are just so precious -- you must be so proud of them!)
Out of curiosity, do "they" (meaning scientists) have any ideas on ways to cure EB? Is it simply funding (i.e. they have some ideas and need the money to see them borne out) or is it that they need ideas? It doesn't change the end result of obviously needing a cure for your precious butterfly, but it may change things from a fundraising perspective. Please know that I'm not judging, I just really don't know the answer -- all I really do know is that the skin is our largest organ and that the constant blisters have got to hurt.
I am so sorry that the last week and the next two weeks are painful for you, as a mother, I can only empathize with you about how hard it must be to live it.
This isn't the most eloquent post I've ever written, but hopefully, you understand that my heart (and my head) are with you in your journey.
I am still praying along with many of you for a cure. I pray that God will reveal that hidden secret to someone soon that will unlock the cure. May He be glorified, and may all EB patients be set free. Soon, Lord, we pray.
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