a few eb things

I just wanted to blog a piece of info, a prayer request, and a sweet video, all related to EB.


I got the following email from Karyn a couple of days ago. I thought it might apply to some of you.
There is a program called the Combined Federal Campaign that is open to all federal employees; each year they have a booklet of various charities that you can donate to via a one-time donation or a recurring monthly contribution over the course of a year.  DebRA is one of the organizations that is available to donate to, the charity code is 11990. 


I would also ask that you go over and meet nine year old Nicholas. He has EB and is day +193 after his bone marrow transplant. He is not doing well. His mom's latest journal entry:
Here's the update as of this week.... Nicholas has yeast infection in his lungs (and fungal pneunomia) and CMV infection in his lungs (CMV pneumonia) plus the yeast infection in his blood. The massive steriod dose that was started (to attack GVHD)  suppressed his immune system which most likely started the lung and infection issues. We had no choice but to stop treating GVHD and try to get all the infections under control. He is still in the PICU and intubated. At 1:00am each morning an x-ray is taken and we've seen alittle change but nothing significant. The next fews days will hopefully tell us something.


He could really use your prayers. You can visit his Caringbridge HERE if you'd like to read more and offer his parents some prayers and words of hope.


Also, I don't know if you remember me posting about a one month old baby, Lucas, who passed away over the summer from EB. His dad wrote this song and created this beautiful video in memory of Sweet Lucas, and I wanted to share it with you.



The song is called “Butterfly Child” by Rob Duskey and Friends and it is now on iTunes and Amazon mp3 with all the money brought in going to DebRA. 


Hug your family tightly, and don't forget what's really important. We are doing a Beth Moore study at church, and she was talking last night on the video about how we so often turn "irritation" into "tribulation" and complain and act like the world is falling apart and life's not fair and so on and so forth. And the world isn't fair and certainly there is plenty of negative you could choose to focus on, but don't turn your daily irritation into tribulation. Satan is prowling the Earth trying to steal your joy (and your soul). Don't let him win. Your God is Greater and Mighty to save.