Patrick Maroun: The Boy Who Sheds His Skin

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At school, Patrick takes part in the physical education class. He stretches for ten minutes at the beginning of the class, and then sits through the remaining time while everyone else suffers. (Photo: Marwan Bu Haidar)

By: Selim Njeim

Published Wednesday, May 9, 2012

This is the story of an exceptional kid. He’s 12 years-old, currently in grade seven, and he loses his skin. This is the story of a child living with the skin disease Epidermolysis Bullosa (EB).

Every single day Patrick Maroun has to deal with the difficulties of his condition, an inherited connective tissue disease causing blisters in the skin and mucosal membranes. EB results in an extremely fragile skin that blisters and peels off at even very gentle trauma, which can be the contact with another surface or even skin itself. This disease affects around one in over fifty thousand people.

At the beginning of the interview, Patrick was sitting on his sister’s bed in his family’s house in Fanar, with a self-composure similar to that of a doctor who knows exactly what he’s dealing with. “I’ve been there,” he said with a grin when I pointed out that many people aren’t familiar with the condition he suffers from. He grew more animated when he said, “Collagen number VII is what I’m missing; it’s the substance that keeps the skin stuck to the meat.” The skin is what the overpowering disease preys upon. Blisters, scabs, and bleeding are habitual.

When he was born, Patrick had scars all over his body. His family members weren’t allowed to see him at first, and he was immediately taken to Boston for special treatment.

Despite his condition, Patrick managed to make his mark. “When he was born, he had the loudest lungs in the hospital; we could hear him every time we stepped inside the building,” said Assaad Maroun, Patrick’s father. “He was born with a natural fighting spirit; every time I tried to tell him to stop crying, he would cry louder,” he added.

For Patrick’s father, giving up or hiding things is not how you raise your child. “We always told him the truth, no matter how hard the truth was,” says Maroun. “We have our moments of weakness, and we have our moments of strength. Sometimes Patrick needs us to push him, but sometimes we need him to push us. At times when I'm at my weakest, Patrick is there consoling me, and the same goes for him,” says Sayde Maroun, Patrick’s mother. She also expressed her shock upon hearing her son say things like: “I'm happy with my life as it is. I want other people to be better! What about the people who have cancer?"

Patrick’s positivity shows clearly. “I go to school like anyone else, and I can say that my daily life is now pretty easy. They let me use the elevators, and I do everything like anyone else,” said the self-reliant seventh grader.

The advice Mr. Maroun gave his son is that God gave everyone cards to play with; even if the cards don’t look good, one must endeavor to do everything possible to overcome life’s obstacles.

As he was growing up, and with people increasingly casting bewildered looks at him, his father used to tell him: “You’re good looking, you can see, you can touch. Other people have no limbs or even worse, so that means you’re still in better shape.”

As he grew in age and wisdom, Patrick started embracing his condition. “He always did okay dealing with the fact that he was different, and gradually learned to accept it. He even developed really hilarious retorts when people decided to stare rudely or gasp,” says Rita, Patrick’s sister.

When he was a baby, Patrick’s parents used to spend seven hours every day tending to his wounds and dressing him for the night. After a while, Patrick’s parents became better at what they did than the nurses themselves and the hospital started sending people over to learn from them.

Precautionary measures around Patrick were much tighter when he was younger. As a baby he had a play pen separating him from everyone else. He used to sleep on sheep skin, and his sister wasn’t allowed to get close to him, for fear that her eyeglasses might hurt him. Now that he has become accustomed to it, getting dressed is more easily done, although the contact of scabs and scars with the clothes can sometimes be very painful. “When I don’t have scabs, I can run around just like now when I was preparing dinner,” said Patrick. The presence of scabs on his feet can make walking an agonizing undertaking. “We can put the heroic character of this act into perspective by thinking how we go crazy if we get a paper cut,” said Rita.

The child’s drive has never yet hit rock bottom, and it doesn’t look likely to do so any time soon. “There’s not much left of grade seven – barely two months,” he said while talking about his future academic plans. Patrick wants to follow a pre-med track in college and to later become a pharmacist. He thinks that pharmacy would fit him perfectly, considering his unusually extensive knowledge of medicine. “My daily shower routines and bandage changing give me lots of information about medicine,” he said.

Alongside his great enthusiasm and motivation, Patrick’s realism is just as remarkable. “There are things I like to do and I can do, and there are other things I’d love to do, but I just can’t,” he said. When asked about what he would like to change about himself, Patrick looked at me for a second, then said, “This” while poking at his thigh. “Of course, I wish I could turn my skin normal or, if I had another chance, I would like to have normal hands, with normal fingers and nails,” he commented. Patrick used to have nails when he was born, but then they fell off. He wouldn’t have fingers now either, had it not been for several operations. He also has bandages wrapped around his hands, between his fingers, around his knees and his back.

At school, Patrick takes part in the physical education class. He stretches for ten minutes at the beginning of the class, and then sits through the remaining time while everyone else suffers. Basketball, volleyball or tennis are out of the question. Patrick can, however, play ping pong.

When he was younger, Patrick used to ask his sister Stephanie questions such as: “Why can you run and I can’t?” “I always used to tell him it’s because he’s special… And I truly think he is,” says Stephanie. Being only one year apart in age, they are the best of friends. Inseparable at school as they are, Patrick is always ready to stick up for his sister in case someone bullies her.

Carriers of the EB faulty gene are called “butterfly kids”, because their skin is as sensitive as a butterfly’s wings. Patrick’s parents are wary when it comes to the still-tentative treatments, knowing that the success rates aren’t very high. Patrick isn’t crazy about the idea of leaving Lebanon to undergo treatments that might never even work. With the hope that a success story isn’t too far off, Patrick’s mother says, “If this is your will, God, then let it be.” She also says that she has always had hope that Patrick is going to get better.

“The little boy with lots of faith,” as she likes to call him, started growing restless during the long interview. “Mom, I want pizza,” he shouted. Patrick’s happiest memory is going to the carnival for the first time with the family and riding the Ferris wheel close the Beirut Corniche. Answering my persistent questions, he remembered the bitter times when people used to be scared of him and avoid him because of the way he looks, but apparently, he couldn’t care less. He has always had more important things to think about, like the two remaining months of grade seven, and his future.

Comments

A humbling story. Thanks for sharing with us, Patrick. Thanks, Selim, for composing this for the world to read.

Thanks, James. I'm glad this story has touched you like it touched me.

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