Man with butterfly syndrome and his mother spread awareness online

WICHITA, Kan. (KWCH) - A 21-year-old Marky Jaquez has a rare skin condition commonly referred to as butterfly syndrome due to the skin being as fragile as a butterfly’s wings.

Marky and his mom have been raising awareness on social media for years but now have more exciting projects in the works.

Melissa Jaquez, Marky’s mother says “you have to have like an emergency plan every single day to make sure if something happens, you always have a way to get what he needs.”

Marky and his mother have documented every step of the way on social media and with thousands of followers on Instagram and TikTok, they’ve captured the attention of some pretty big names. This has helped them raise awareness and educate people about butterfly syndrome.

They want to widen their audience to bring attention to the challenges people with E.B. face across the globe. The first project is a book documenting Marky’s life, starting with when he was born 21 years ago and the second is a non-profit. The idea came after they were contacted by a family in the middle east.

“They had one child just die from starvation. He couldn’t eat by mouth, and they couldn’t get him the basic medical care to get him a mic-key button so he could eat,” says Melissa.

Melissa says when she tried to send formula, it was blocked by customs, stating, “I sent like two cases of formula over there and everything they needed and customs wouldn’t let it through, and he ended up passing away. So that’s why I want to start this charity, then you have a little bit of leeway because it’s coming from a nonprofit and not a person, so there are different avenues to take to get them what they need.”

She hopes that through this non-profit, she’ll have more success reaching those in need. Melissa says she hopes to launch the nonprofit in the next couple of months. You can message her on Instagram or TikTok.