I recently found this blog through Katie in Uganda www.servinghischildreninuganda.blogspot.com. This girl, like Katie, also lives in Uganda. She helps to run a feeding program, but also uses her home as a center to care for and educate parents of children who are extremely malnourished or extremely sick. The children and sometimes the parents will stay with her while she helps to bring the children back to health at the same time educating the parents on how to properly care for their sick children. Nearly every post I've read from her has brought me to tears. There have been stories of 20 something year old girls who only weigh 36 pounds and have been abandoned by their families for a disability they have; the parents didn't want the responsibility to care for them any longer. It hurts to read those stories. But the most recent one I think has been the most difficult to read. A one month old little boy named Robert who suffers from an extremely rare genetic disorder called Epidermolysis Bullosa. It's a skin condition that causes the skin to be extremely sensitive to nearly EVERYTHING, the slightest movement or friction causes the skin to tear or rip right off of the body which leaves open wounds that generally will fill with fluid or blood and cause blisters all over the body. There are many different forms, sometimes it's mild and will only affect the soles of the feet or hands. In Robert's case, his whole body is affected. Through reading the post about Robert I started reading some of the comments people had posted, and one in particular caught my eye, it was a link to another blog about a little boy named Daylon from California that has the same condition, and his is extremely severe. I clicked on the blog link, and as soon as I saw the pictures I couldn't stop sobbing www.lovingbabydaylon.blogspot.com
I spent most of the day yesterday reading about this little boy and just the struggles he faces on a daily basis, and I couldn't stop crying. I hurt for how much pain he is in and I hurt for his parents knowing how much pain he was in, and there was nothing they could do and I was mad at God for allowing this little boy to have to go through this at just 13 months old. WHY?
I had called Scott earlier in the day crying for these two little boys and asking him what we could do to help. We know of an organization called Hands That Heal that helps to get medical visas for extremely sick children in third world countries to come to the US to receive medical care. I thought maybe we could refer Robert from Uganda for this program. But right now there is no cure for this condition. There are some clinical trials that are being done and Daylon is actually participating in one now at the University of Minnesota. He received a bone marrow transplant from his brother, and they hope this will help the body to heal itself, although he's had a pretty tough time over the last 80 days. You can read about his whole story through their blog.
When I got home last night I wanted to show Scott both of these blogs, and again as soon as I opened up Daylon's blog I was crying uncontrollably. I'm so sad for him. I look at his swollen face and in his eyes and I immediately feel so hurt for him. This has never happened before, I've read about young kids and babies that have leukemia or cancer and have to go through all sorts of treatments, and it's sad, but I usually don't think too much more after that. But this was completely different. I haven't been able to stop thinking about these two little boys. I asked Scott last night, through sobbing tears, "why does God do this, why would He let anyone hurt so much"? And he said, "because we live in a fallen world, but this isn't our final home and you have to know that whenever Daylon and Robert go to heaven that they won't be in pain anymore." And it is comforting to know that, that someday there will come a time when they won't hurt anymore. But selfishly, I don't want these little boys to go to heaven yet. I don't want their families to be sad if they're not here anymore. I want God to heal them and I know He can. Please God, these boys are completely under your care and I just pray that you miraculously heal them of this horrible disease.