Y'all. I'm not even going to apologize for not updating this damn thing...I have a lot of guilt for not doing so since I did such a great job going through the pregnancy and one day showing Ava this. But like I said when I updated via my phone (which is a p.i.t.a) that I have a journal on there that I update and can write in her baby book.
But let me get to why I'm blogging for all 26 of you to read (I hate my job thanks for making me go private you snoopy jerks).
I have never heard of what I'm about to write about until last week and let me tell you this has been eating at me all week long.
There is this amazingly beautiful boy named Tripp. He lives about 45 minutes from me. He is a little over 2 and has EB. It's a rare genetic skin disease that causes blisters by the slightest friction and open wounds.
The doctors estimated he would be gone from this world at one. He turned two on May 14th. He is getting bad everyone. Some kids have survived and manage and today on one of the prayer facebook pages a lady posted a picture of her best friend who had it as bad as Tripp and now she's grown and you can't tell (but she's a miracle). Some children have had a bone marrow transplant and gotten better but some have passed...it's very invasive since they have to give chemo first.
These pictures are devastating to me. I cry every.single.day.
Let me tell you I don't expect folks to feel the way I do...everyone is sad when they read the blog and hear stories and see pictures of this sweet little man but honestly my heart has been aching these past two days like the first few days I dropped Ava at daycare.
I have never met this angel, nor his wonderful strong mother Courtney, never talked to them on the phone or anything but I feel connected to him for some reason.
I want to do my part and will be thinking about how to get more involved.
Due to the stress of this terrible thing Courtney and her husband have split and the divorce was this month. I can only imagine the stress and pain they were under.
She now lives with her amazing supportive parents and from what I gather at least Tripp's grandma (his dad's mother) comes over a lot. I would hope that Tripp's father does but since Courtney is not only an amazing mother she's the epitomy of class and has not talked about it other then just to say we're divorcing and that's all we need to know.
Many folks have been having prayer vigils, candlightings, and have had some run's and what not. I think the 20th they're putting together a community event that Mr. B, Ava, and I will definitely be making the drive for.
I know Tripp won't be there well because that would just do so much damage to him but maybe Courtney will. And if she's not who cares...she's taking care of that baby boy.
I pray multiple times a day for him and his family and even pray with Ava and y'all she stops whatever she's doing and listens so intently when I do...any other time when I talk to her she's like "phhhhugh lady I'm doing my own thing".
So here's the link to Courtney's blog. http://randycourtneytripproth.blogspot.com/ (It won't let me insert a link all fancy like it normally does)
If you feel compelled to donate to help out because she's a saint yet again she said she'd rather us donate to Debra www.Debra.org which is an amazing company trying to find a cure and also gives tons of special supplies and guidance to families raising a child with EB.
So I donated to them yesterday but we're all still sending money to help with medical expenses. She has her address on her blog.
Little Tripp loves his tiny Elmo in one hand and Big Bird in the other...I think by now he's blind (this just happened recently) because the tissue has fused together. :( And even though he can't see it I'm finding a special card that has them on it.
I need to get involved...I just have this calling...like sometimes in life there is something that just happens and you feel compelled to do?! I don't know it's strange. But I think about them every waking minute.
I just have to get this out because I have been depressed and heartbroken since reading her blog last week. I know everything happens for a reason, bad things happen to good people, but this sweet angel does not deserve to be in the pain he's in. So I'm praying for a miracle to at least heal him 50%.
Thanks for taking the time to read all of this.
We love you Tripp! Always thinking about you.
Wear red ribbons in honor of EB and hoping to finding a cure!
