By Martha Hewett @Martha_Hewett
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Videographer / director: Nathan Johnson
Producer: Martha Hewett, Ruby Coote
Editor: Pete Ansell
Marky, 19, was born with Epidermolysis Bullosa, often referred to as EB. The condition affects anywhere that he has skin and internally too, such as his eyes, mouth and organs.
Marky’s skin is so fragile it could blister with the slightest touch.
Despite the severity of the condition, he has always tried to live his life to the full.
Marky told Truly: “I really like it when people tell me that they’re proud of me and that I’m strong and brave.
“I feel like I’m proud of myself because I have all the pain I could feel.”
Marky, who lives in Kansas, 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 mum, 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.”
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.”
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 American Bullies – 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.”
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.”