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.
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.