Inner Strength

Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He suffers greatly as well though, and that fact can never be ignored. I took the following pictures this past month to give everyone a small glimpse of what his skin looks like under the bandages. He’s part of the SD -101 cream trial (http://ebstudy.com/) so if you think his wounds look better, it’s because they do. This is his right arm. It’s looking fantastic. I know, I know,Read More

Freedom From Suffering

I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures. In the meantime the only thing I can do is continue to spread awareness. I am not a millionaire nor a scientist. I can’t donate oodles of money for research and I also do not have either the skill nor the expertise to research how to actually find a cure for EB, so I must support those that do and continue my quest in getting this disorder known. The truth of the matter is that with enough money a cure will be found. There are now enoughRead More

Updated Wound Pics :-(

As I posted yesterday, wound pics generate a barrage of negative comments on Facebook, they usually end up being reported and deleted, which is why I don’t post them there anymore. It’s just not worth getting banned over them when I can just post them here. This is EB-more specifically, Recessive Dystrophic Epidermolysis Bullosa-Severe Generalized subtype. This is what my son has. I know very well how upsetting these photos are. They upset me greatly. However, what other way is there to fully explain the condition? I haven’t found another one that is this eloquent. There are no real need for words. I have some photos of his arms that are even more disturbing to me than these,Read More