Wichitan with rare skin condition, global inspiration, dies at 21

Published: Dec. 30, 2021 at 8:58 PM CST
Email This Link
Share on Pinterest
Share on LinkedIn

WICHITA, Kan. (KWCH) - A Wichita man who become known around the world for inspiring others has died. Marky Jaquez was 21 years old.

Looking back on his life and what he meant to many in his community and far beyond, Eyewitness News on Thursday spoke with the family’s pastor about how Marky’s legacy will live on.

Pastor Shannon West said in death, Marky’s legacy is far from being cemented.

“This is where Marky’s legacy truly begins. I have a feeling the thousands upon thousands he reached in his life will be millions due to his passing,” West said.

Marky was known for inspiring everyone around him and making the world aware of his condition, epidermolysis bullosa, or “EB,” also known as “butterfly syndrome.”

“He was born without the genetic makeup that connects and binds his skin, so anywhere there is skin or mucus membranes, the skin comes off with friction or touch,” Marky’s mother, Melissa Jaquez explained to Eyewitness News in May of 2020. He also has it internally.”

At that time, hopeful stem cell trials at Stanford University were postponed due to the COVID-19 pandemic. This was one of the trials in which Marky maintained a positive attitude and continued to build up others. Among those he inspired were celebrities Kathryn and Josh Brolyn who raised money to make Marky’s dream of a beach vacation come true.

“No mater how much pain he was in, he always made people feel better,” West said of Marky.

An outpouring of support for Marky and his family his coming from his church and community, as well as from people around the world.

West said over the last few weeks, Marky was fighting to stay alive after deciding on his own that he didn’t want any more treatment for his condition.

“He knew where he was going and his goal and his life mission was to make sure that he could get as many people (as possible) there to follow him,” West said.

A man of faith and determination constantly showed others not to give up.

“If you tried to feel bad for him, he would remind you that God created him perfect, that no matter his physical limitations, that he was here for a purpose,” West said.

Famous actors and athletes followed his story, inspired by his courage. For many, Marky is leaving an unforgettable impact.

“A lot of people go through life wanting to create a legacy and wanting to do something that when they leave this earth, that maybe, just hopefully, their life has made a difference. And at 21 years old, I’ve never met another person whose life has made more of a difference already,” West said.

There will be a celebration of life for Marky sometime next week at Word of Life Church in Wichita. There is also a GoFundMe page to help his family with funeral expenses.

Copyright 2021 KWCH. All rights reserved.