WICHITA, Kan. (KAKE) - Marky Jaquez, a Wichita man with an incredibly rare and painful skin disease has died, his mother says. He was 21.

Marky was diagnosed with the rare disease Epidermolysis Bullosa and wasn't expected to live past 14.

"Epidermolysis Bullosa recessive dystrophic, which is also known as the butterfly disease," Melissa Jaquez said last month. "What he has is progressive and terminal."

Melissa said Thursday on Instagram that Marky died peacefully in her arms and thanked everyone for the outpouring of support. 

Melissa has more than 430,000 followers on Instagram. One of them, actor Josh Brolin, said the Jaquez family "has moved me closer to so many important things. Thank you for the smiles and the punch to the spiritual heart of so much."

Epidermolysis Bullosa, often referred to as "butterfly disease" because it makes the skin as delicate as a butterfly's wings. The condition affected Marky externally and internally, with horrific blisters and tears on his eyes, mouth and organs.

Marky's brother, Carlos, also died from the disease when he was 14. 

A GoFundMe has been set up to help Marky's family. His funeral service is scheduled for 11 a.m. Friday, January 7 at Word of Life Church at 3811 North Meridian. The service is open to the public, but Melissa asks that no photos or video be taken. Those is attendance can wear red, Marky's favorite color.

 


Previous story posted on Dec. 7, 2021:

When Yuri Williams puts on a particular suit, you know magic is soon to follow.

Kansas is state number 20 on his 'Hope 4 The Holidays 50 States Blessings Tour' which is a current cross country trek. This is the third time he has made is way across the country and with each state, new memories are made.

He and his partner Rodney Smith Jr., make their way to homes of children battling illnesses. They spread kindness and a little cheer to every one they encounter.

Yuri wanted to make sure Marky was paid a visit this time around the country.

Melissa Jaquez is Marky Jaquez's mother. She says he's the only person in Kansas with this rare disease.

"Epidermolysis Bullosa recessive dystrophic, which is also known as the butterfly disease," Melissa Jaquez said. "What he has is progressive and terminal. They gave him 14 and he just had his 21st birthday. Yuri wanted to celebrate that and come and give him gifts."

This young man sure loves Marvel.

They are no longer strangers thanks to social media. Gifts for one man, is healing for another.

"You inspire and motivate me to keep going," Williams said to Marky.

"He was excited when he got the toys today. I just feel that energy and it keeps me going everyday to continue to do what I do," Williams said.

Yuri Williams, is the 'A Future Superhero and Friends' founder. If you ask him why he does this, he will say it helps him honor his mother.

"Who I lost to cancer in 2009. I was in a 5 year depression period and I met my friend Rodney Smith Jr who is Santa's Helper and who is helping me along this road. After I met him, I got out of that 5 year depression and went on tour with him. We just want to uplift people during this time."

The feeling from this short, but sweet visit, is something Melissa hopes will spark kindness in the lives of others.

"It's amazing for people to see this because then they can feel like well if these guys can do it we can get involved and we can do it as well. Kindness is priceless," Melissa added.

"Hopefully people will see this and it will inspire them to get out and do the same. Not just during the holidays, but every day," Williams added.

The duo is heading to Missouri next.

You can learn more about what they do and how you can help support them by visiting afuturesuperhero.com.