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WICHITA, Kan. — Parents’ love, a rare disease and social media are coming together with the hopes of making a difference. 

Marky Jaquez was 21 years old. He had a rare skin disease called epidermolysis bullosa. It is also known as the butterfly disease because the skin is as fragile as a butterfly wing and can break just at the touch of the skin. 

He left a legacy on many. Marky is famous on TikTok and his mother records his daily doings, hospital trips, and fun activities. She said it’s to raise awareness about what the disease looks like. 

Some of the things Marky was most known for was his interactions with his dog, King David. 

“When Melissa (Marky’s mother) would be changing Marky’s bandages, King David would come up and jump on the bed to make sure that Marky was doing okay,” said Marcos Jaquez, Marky’s father.

He was also known for loving church, worship music, and his church family. 

“He cared about praying for other people. He cared about people’s souls really,” said Marcos.

His mother showcased his widespread love for people in the community and across social media. Marcos said he loved everyone. 

“Marky, he just loved every single neighbor, no matter what,” he said. “That’s what Marky’s life was about, was going through the struggle, going through the pain, going through the blood, going through all that just to say, hey, Shannon, how are you doing? Hey, Daddy, how’re you doing? Like that’s what Mark his goal was, was to make sure everybody was okay.”

Marky’s parents said social media allowed more people to see what this disease was, the everyday struggle that came with it and also the light that he kept through the painful moments. 

This is a genetic disease and it is the second child the family has lost to EB or the butterfly disease. 

While Marky’s passing is difficult, the family said the awareness isn’t something they play to stop anytime soon. 

“I think in the hundreds that he reached while he was alive, it is going to become millions now that he’s passed because his legacy is going to live on and be even more powerful than it’s ever been,” said Shannon West, Marky’s pastor. 

“We’re just gonna keep going, that’s all we can do,” said Marcos.

The family is looking at ways to donate items and money towards someone in a similar situation.