Yesterday Evan had his monthly ENT appointment. These visits are crucial for us since I am obsessed with keeping his ears clean and free of ...

Here are a few super cute videos of Evan. In the first video he takes a few steps (with a little help from Mommy) and the other video is ho...

This past weekend my mother, Evan and I traveled to Springfield IL to visit a special family. I have been looking forward to this trip and c...

I am sooooooo excited to announce that Evan has started moving forward in his pony-walker. He is still working on sitting, rolling, propping...

Epidermolysis Bullosa Awareness Week  October 25-31 "Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the...

When people see Evan, many say that his skin looks great, including his Dermatologist. About 95% of the time they do not notice that he is s...

This past weekend a good friend of ours ran the Hartford Half-Marathon in honor of Evan and to support the FIRST Foundation . We were able t...