Teen with terminal 'butterfly skin' disease is in constant agony

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A 19-year-old boy with an incredibly rare and painful 'butterfly skin' disease that killed his older brother has opened up about what it's like to live with the agonizing condition that causes his skin and body to blister at just the lightest touch.   

Marky Jaquez, from Kansas, was born with Epidermolysis Bullosa, often referred to as EB or 'butterfly' disease because it makes the skin as delicate as the insect's wings. 

The condition affects his body both externally and internally, causing horrific blisters and tears on his eyes, mouth, and organs, and Marky's diagnosis is so severe that doctors didn't believe he would survive past his 13th birthday - a prediction that he has defied for nearly seven years. 

Survivor: Marky Jaquez, 19, was born with Epidermolysis Bullosa, an incredibly rare terminal disease that causes his skin to blister and tear and the slightest touch

Survivor: Marky Jaquez, 19, was born with Epidermolysis Bullosa, an incredibly rare terminal disease that causes his skin to blister and tear and the slightest touch 

Agonizing: The condition is known as 'butterfly skin' disease because it makes the skin as delicate as the insect's wings

Agonizing: The condition is known as 'butterfly skin' disease because it makes the skin as delicate as the insect's wings 

Defying the odds: Doctors told Marky's mother, Melissa, that he would likely not survive past the age of 13, and yet he is getting set to celebrate his 20th birthday this year

Defying the odds: Doctors told Marky's mother, Melissa, that he would likely not survive past the age of 13, and yet he is getting set to celebrate his 20th birthday this year 

Horrific: Marky's body has to be covered in bandages every single day in order to protect it as much as possible - however his mouth, organs, and eyes are also affected by the condition

Horrific: Marky's body has to be covered in bandages every single day in order to protect it as much as possible - however his mouth, organs, and eyes are also affected by the condition 

However, despite the severity of the 'extremely, extremely painful' condition, Marky has always tried to live his life to the full - and his positive attitude is serving as an inspiration to those closest to him, who have watched him defy the expectations of doctors again and again. 

'I really like it when people tell me that they're proud of me and that I'm strong and brave,' Marky said. 'I feel like I'm proud of myself because I have all the pain I could feel.'

Marky has Recessive Dystrophic type of EB, meaning that both of his parents had to carry the gene for Marky to receive the disease.

He has to undergo the painful routine of having his bandages changed each day and uses a wheelchair to get around with the help from his family.

His mom, Melissa, cares for her son full-time and describes him as a 'joyous kid'.

She said: 'Marky is a people lover, he loves people, he loves life and he loves animals.'

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Share Devastating: EB is terminal and there is no known cure or positive treatment. Marky's condition will continue to worsen until it eventually kills him (pictured: Marky as a child)

Devastating: EB is terminal and there is no known cure or positive treatment. Marky's condition will continue to worsen until it eventually kills him (pictured: Marky as a child) 

Heartbreak: Marky's older brother Carlos was also born with the disease, and he passed away from it at the age of 14

Heartbreak: Marky's older brother Carlos was also born with the disease, and he passed away from it at the age of 14

Farewell: The siblings were incredibly close, however Marky says he is happy that his brother has found peace and is no longer in the same pain that he experiences every day

Farewell: The siblings were incredibly close, however Marky says he is happy that his brother has found peace and is no longer in the same pain that he experiences every day 

Positive outlook: 'We were really close. When he passed away, I was really sad, then afterwards I knew he wasn't in pain or anything. He was finally healed,' Marky (left) said of Carlos (right)

Positive outlook: 'We were really close. When he passed away, I was really sad, then afterwards I knew he wasn't in pain or anything. He was finally healed,' Marky (left) said of Carlos (right)

Carer: Marky's mother Melissa (center) cares for her son full-time, and says she is determined to make the most of her time with him, especially after losing one child to the condition

Carer: Marky's mother Melissa (center) cares for her son full-time, and says she is determined to make the most of her time with him, especially after losing one child to the condition 

Despite his positive nature, Marky is no stranger to pain – both physical and emotional.

Marky's brother, Carlos, was born a year earlier than Marky with the same type of EB.

In 2013, Carlos passed away from the disease at the age of 14.

When asked about Carlos, Marky said: 'We were really close. When he passed away, I was really sad, then afterwards I knew he wasn't in pain or anything. He was finally healed.'

Melissa described the two brothers as inseparable, they had their bandages changed together each day and even slept in the same bed together.

'They were each other's partners, everything they did was together.'

Strong: Marky admits that the condition is 'extremely, extremely painful', however he still manages to maintain a positive outlook on life

Strong: Marky admits that the condition is 'extremely, extremely painful', however he still manages to maintain a positive outlook on life 

Inspiration: 'I really like it when people tell me that they're proud of me and that I'm strong and brave,' Marky said

Inspiration: 'I really like it when people tell me that they're proud of me and that I'm strong and brave,' Marky said 

Pain: Marky's mother Melissa wraps his entire body in bandages and gauze every day, a process that is meant to protect the teen, but still causes him unimaginable pain Pain: Marky's mother Melissa wraps his entire body in bandages and gauze every day, a process that is meant to protect the teen, but still causes him unimaginable pain

Pain: Marky's mother Melissa wraps his entire body in bandages and gauze every day, a process that is meant to protect the teen, but still causes him unimaginable pain 

Support: The teenager has never been able to walk, and uses a motorized wheelchair in order to get around

Support: The teenager has never been able to walk, and uses a motorized wheelchair in order to get around

Thankfully for Marky, he has his older brother, Michael, who he's incredibly close to.

Melissa continued: 'Marky just thinks Michael walks on water, he just radiates joy when he sees him.'

Although Michael lives an hour away, he ensures he spends as much time as he can with his little brother but growing up it was difficult for Michael to see Marky and Carlos in such pain.

Michael said: 'It was very difficult with two brothers who had EB as I didn't understand how to interact with them.

'You have to be gentle with them and it was hard as I just wanted to play with him like I would any other kid.'

Michael isn't Marky's only best friend; he also has his two dogs, American Bullies named Cephas and King David.

The dogs are emotional support pets and help distract Marky when he is having his bandages changed.

'They love me and protect me,' Marky said. 'I think they probably do feel my pain.'

Close: Marky's mother Melissa looks after him day-to-day, however the teenager has a very close relationship with both parents

Close: Marky's mother Melissa looks after him day-to-day, however the teenager has a very close relationship with both parents 

Finding faith: Melissa said that Marky has also found inspiration at his local church, where the community has rallied around to support him

Finding faith: Melissa said that Marky has also found inspiration at his local church, where the community has rallied around to support him 

Emotional: 'He makes me proud by how he always thinks of everybody else first, he has the most loving heart,' Melissa said of her son v

Emotional: 'He makes me proud by how he always thinks of everybody else first, he has the most loving heart,' Melissa said of her son 

Furry friends: Marky also has two dogs, Cephas and King David, who help to keep the teenager  busy while he is enduring his bandage changes

Furry friends: Marky also has two dogs, Cephas and King David, who help to keep the teenager  busy while he is enduring his bandage changes

Despite the severity of Marky's disease, he enjoys living his life, spending time with family, pets and his church community.

'Other than our home, the church is the most significant place for Marky, it's the place he feels most at home.' Melissa explained.

Marky loves making new friends, of all ages, wherever he goes – an attribute he feels makes him who he is.

'I think that's why I attract people to me; I really enjoy making a bunch of friends.'

For Melissa, it's been undeniably challenging to watch two sons endure the pain from their condition, but she's adamant to not let it ruin the time they spend together as a family.

'When you have a child that's terminal, it's not about the memories it's about the moments because the memories fade but the moments stay with you.

'He makes me proud by how he always thinks of everybody else first, he has the most loving heart.'

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