Ruby (Mom, 30) and Robert (Baby, 10 mos) : Epidermolysis Bullosa

Ruby (Mom, 30) and Robert (Baby, 10 mos) : Epidermolysis Bullosa

When Robert was first born, his legs were missing tissue and skin from large areas, but he did have muscle. He looked as if he’d been mauled, covered in bright red skin. The IV caused blisters, then blisters began from wearing a diaper, and eventually blisters covered his entire body. His sweet baby hands and mouth were especially bad, making it hard for him even to eat.

We did not have one day without Robert experiencing painful blisters and watching his skin peel off. Our days were filled with constant bandaging without pressure, which was very challenging. We also felt no choice but to medicate Robert with morphine and other opioids over the following months.

The agony of watching my son in such terrible pain was inexplicable. When I touched his skin, it would literally peel off. I would stay strong for him and the family, then shut myself in a room and let it out – just cry out all the sadness, anxiety and worry I had bottled up inside.

One day, I saw a conversation on an EB community site about Theramu and just had to try it on Robert. First, we applied the oil to his mouth, and within a day, a bad blister started clearing up. He actually smiled and wanted his bottle! We began using a compressor to spray the oil on his entire body twice a day.

Robert loves being sprayed with Theramu! When we turn on the compressor, he stops crying and starts laughing. We no longer give him morphine, and he hasn’t had a blister since July. Best of all, he can actually play with his 10 siblings. You can’t imagine how much this means to our family! For his sisters and brothers to hold and snuggle him, to see him clap and laugh, to be able to wear clothes, and for me to kiss his little sweet baby feet.

I will never forget one day another EB dad complimented Robert on his skin. I was taken aback – nobody had ever complimented my son before!

Robert now lives in a new world – with hope, fun and normal baby activities!