The Internet at the Speed of Thought

Skinned Alive: This Boy’s Skin Falls off With the Slightest Touch

at 6:41 pm | By

Hero Mom

butterfly boy with mom

Source: YouTube @Barcroft TV

Jonathan’s mom, Tina Boileau, has to be there for her son every second of the day. Jonathan says his EB effects everything from “eating, to walking, to getting dressed.” He needs help moving around and constantly needs his protective bandages changed, all of which takes a lot of time and patience. He tells Barcroft TV that the bath is “horrendous” and can take about 3 1/2 hours which includes slowly and carefully removing bandages and soaking in salt water. Jonathan loves and appreciates the care his mother gives him. He says, “I believe I chose my mom. Because I knew she would be able to take care of me.”

Making Connections

butterfly boy in bath in pain

Source: YouTube @Barcroft TV

We all know how cruel children can be, especially during their teenage years. So it’s no surprise that it’s very hard for Jonathan to find friends. He goes to school in a wheelchair and has to go home immediately after classes for his salt bath every afternoon.

He has met other children with EB, which his mom said motivated him to help raise awareness. Jonathan has become an ambassador for EB awareness. He goes to speaking events in Canada and the US, where he is positive and eloquent.

A New Hope

butterfly boy showing blisters on legs

Source: YouTube @Barcroft TV

Recently Jonathan has undergone a bone marrow transplant from his mother as well as chemotherapy and a stem-cell transplant that may or may not take. Eight of the 30 children who have undergone the same procedure have died. But two-thirds of the of the patients had miraculously results: tougher skin, reduced blistering and better wound healing.

Jon had treatment only a few days ago. We have to wait and wish him all the best, a speedy recovery and a more comfortable life.

Want to learn more about EB? Check out DEBRA’s website. Please SHARE this with your friends to raise awareness for EB!