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Lifestyle

Teen Suffers from Rare 'Butterfly' Skin Disease That Leaves 97% of Body Raw and Exposed

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Meet 18-year-old Marcos Jordan Burrola-Jaquez, a teenager living with a rare skin disease that he will battle for the rest of his life.

Marcos, known locally as Marky the Rock, knows that his genetic disease is terminal. At his young age, he has a wisdom beyond his years and a passionate faith in Jesus, living his life as a testimony to his faith.

Marky was born with recessive dystrophic epidermolysis bullosa, a rare, excruciatingly painful skin disease also known as the butterfly disease because the skin that he does have is delicately thin like a butterfly’s wings.

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Melissa Jaquez, Marky’s mother, told Liftable, a section of The Western Journal, that her son currently does not have skin over 97 percent of his body.

Marky’s younger brother, Carlos Xavier Tharp-Jaquez, was also born with the disease. Sadly, Carlos passed away in 2013 at the age of 14.

Marky cannot walk, does not attend school, and relies on his mother for daily care as she feeds him through a tube and changes his bandages.

But Marky and his mom want people to see the person behind the skin condition, a person that has the same kinds of interests as other 18-year-old teens.

“I like going out and I’m very social,” Marky told Inside Edition. “I know I might have all this stuff on me […] but I’m still a normal kid.”



Even though Marky has medication to help him cope with the pain, Jaquez knows her son’s pain never goes away entirely.

“The most challenging, I would have to say, is not having the power to stop his pain and living with the knowledge that his disease is terminal,” Jaquez told Liftable.

But despite the pain, the family keeps an eternal perspective in mind, confident that one day, when Marky takes his last breath on earth, he will take his first breath in heaven.

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“The most uplifting is seeing him never losing hope,” Jaquez told Liftable, “never losing his sense of wonder and amazement with the small things in life, such as his love for God, his family, his church, his faith in mankind. He truly is my hero.”

As a mother, Jaquez aims to do her very best when it comes to caring for her son.



“I was given the absolute privilege to be the mother of two boys who have an AMAZING testimony for the world,” Jaquez told Liftable, “and I try every day to honor that privilege.”

While Marky’s condition is complicated and difficult to endure at times, Jaquez does not view her child as a burden, but as a gift from God.

“God gifted me these boys to show the world that He hurts with us,” Jaquez told Liftable.

“He weeps with us, He walks with us, but He never leaves us and I’ll be able to one day run with my boys in their perfect bodies.”

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Path 27
A graduate of Grand Canyon University, Kim Davis has been writing for The Western Journal since 2015, focusing on lifestyle stories.
Kim Davis began writing for The Western Journal in 2015. Her primary topics cover family, faith, and women. She has experience as a copy editor for the online publication Thoughtful Women. Kim worked as an arts administrator for The Phoenix Symphony, writing music education curriculum and leading community engagement programs throughout the region. She holds a degree in music education from Grand Canyon University with a minor in eating tacos.
Birthplace
Page, Arizona
Education
Bachelor of Science in Music Education
Location
Phoenix, Arizona
Languages Spoken
English
Topics of Expertise
Lifestyle & Human Interest




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