A Wichita man with an extremely rare skin disease has died aged 21. Marky Jaquez was diagnosed with Epidermolysis Bullosa, an incredibly painful skin disease, and was not expected to live past 14 years of age. "Epidermolysis Bullosa recessive dystrophic, which is also known as the butterfly disease," his mother Melissa Jaquez said last month. "What he has is progressive and terminal."

Epidermolysis Bullosa, a very uncommon disease, is often referred to as 'butterfly disease' because it makes the skin as fragile as a butterfly's wings. The condition affected Marky both internally and externally. Marky's brother, Carlos, had died from the same disease earlier.

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Marky was very popular on TikTok. It was his mother, Melissa Jaquez, who would record his daily activities, hospital trips, and fun activities. Melissa said that this was to raise awareness about the disease.

Who is Marky Jaquez's mother?

Last week, Melissa took to Instagram to inform viewers that Marky died peacefully in her arms. "Our beautiful Marky has been restored. We can only imagine his joy in being reunited with his brother and being face to face with Jesus. What a beautiful welcoming we imagine he has received," Melissa wrote. "He went peacefully from his Mamas arms into the arms of Jesus. We want to thank everyone for the outpouring of love in this time and for everyone who has prayed us through this time."

"God be glorified! We thank you for your promises. You are good," she added. "We ask for grace and understanding in this time as we both grieve and celebrate."

Melissa's Instagram bio says she is the "Founder of ironbutterflyinc go to @ebmrf @ebresearch @wefighteb to find out how you can help find a cure for Epidermolysis Bullosa". She has constantly used her Instagram feed to keep her audience updated about her son. She has 430k followers on her Instagram. 

Back in 2019, Melissa revealed how she was accused of burning her sons after people began to learn about their rare skin condition. "The public contacted the police who came knocking on my door accusing me of burning and abusing my children because of how they looked," Melissa had said. "I was in total shock. It made me feel very alone. I just didn't understand why they would go out of their way to call the police instead of approaching us directly and offering support."

In her last Instagram post, which was uploaded around 14 hours ago, Melissa shared a video with the caption, "Markys story will be told through the ages … long after we’re all gone people will still tell stories of the amazing man that taught them about love , faith and the true meaning of life ..".

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