I've given a lot of thought as to how I want to go about explaining the importance of this reason for me. There is a large portion of this blog's following that either know Daylon personally and have seen EB and how he's suffered or that follow several EB blogs and have heard all of us parents describe on a regular basis what our children go through living with this disease. It's a horrible disease. Before Daylon, I would have never imagined that such a horrible disease could possibly exist. There have been many, many times especially early on in Daylon's life when I would be in the middle of a bandage change or moments after I hurt him by trying to help him and I would think, "How can this be?".
Yes, it's painful. Yes, it's heart wrenching. Yes, there aren't enough words and it's worse than any parent could possibly describe. The awful truth is, there is no cure. With a cure comes hope.
I believe that we are close to a cure. Really close. There are some clinical trials out there trying to find a cure. I truly believe in the possibility to cure this disease with the Bone Marrow Transplant program at the University of Minnesota. There are still kinks that Dr. Tolar and Dr. Wagner are trying to work out, but they're making progress all the time. Unfortunately, like any other new development, they are only allowed to make progress when there's funding for the research. Because it's not a disease that a large population of the world suffers from, it's hard to get government funding, so it's left to the people. The more research they do, the safer transplant gets.
On October 11th of this year, exactly one year after Bella's passing, Nicholas Moore's mom posted to his blog that he had passed away the better part of a year after transplant. Thanks to funding, the last several transplants have been safer and the children are doing better than before the changes were made.
I am an EB mom with hope for her child's future...and I want other parents to feel the same way. I believe these doctors have the possibility of curing this horrific disease sometime in the near future.
I can tell you all day long how I think we're close, but I realized pictures can speak louder than words....
The following image may be too graphic for some.
April of 2010- Before Transplant
6 Weeks Ago-
Raising awareness means that when people are looking to donate for a cause, EB can come to their mind because they actually know what it is. It's a pretty important reason to raise awareness.
If you're interested in donating towards the cure now, you can text "Bella" to 50555 in honor of Bella or visit the puck website HERE to donate on a secure website. If you or someone you know is looking for a charity to donate towards at the end of the year for a tax write off, P.U.C.K. (Pioneering Unique Cures for Kids- Dr. Tolar's and Dr. Wagner's research ) accepts donation all year long! :)
A HUGE thank you to all of you who have helped in spreading EB awareness this week!! The support that the EB community has received from all of you; our family, our friends and our support system has been amazing!! Together we'll touch the world. We are so grateful.