Donate now to EB RESEARCH

Donate now to EB RESEARCH

DONATE HERE          THE WORST DISEASE YOU NEVER HEARD OF A severe rare genetic skin blistering condition that can also affect internal organs. EB skin is as fragile as the wings of a butterfly. Even gentle skin contact causes devastating wounds. When dressings stick, the skin often comes away too.  There is [...]

Ethan’s Life

Ethan’s Life

Ethan was born on October 31st 2014. He had painful wounds on his buttocks and had only 4 finger nails that fell off in the few days shortly after, along with the set on his toes. He began struggling to breath his second week post birth with his chest retracting to move air through his [...]

Reevaluating Strength

Ethan's strength continues to amaze us. He has survived and is healing despite the expectations of all of his doctors. It doesn't make sense medically. One of his doctors believed that if he were to be intubated he wouldn't survive more than a day because of the extra trauma to his compromised trachea. Ethan has [...]

The Struggle to Survive

Ethan faces complicated circumstances. Five blisters blocking his airway forced us to intubate after he had tired out from struggling to breath. It is a miracle that his lungs and heart are still working after the struggle he has endured the last three days. The medical team is trying everything to secure the tube so [...]