Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown.
Add in numerous other medical symptoms cause by his ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome, and you understand why being cautious was paramount throughout his childhood.
Now 19, Jayden is a thrill seeker! Shelly Pagano, his mom, says that Jayden loves wrestling and martial arts. Shelly and her husband, Joe Pagano, own Red Dragon Martial Arts in Pennsylvania.
“Of my three boys, Jayden is the one who is the risk taker. Can you believe it?” Shelly said. “He and his stepdad, Joe, love to do the craziest things. We had a Halloween demo [at our martial arts studio], and he jumped on my husband on a table and they broke the table…like they’re crazy!”
Jayden’s penchant for action may come from his love of watching superhero movies. It may even be inspiring what he wants to do in life. The recent high school graduate is contemplating his future. He thinks about law enforcement but recently began training to learn about being a volunteer emergency medical technician (EMT).
Jayden is also learning more independence. Like any parent, Shelly looks back and thinks about things that perhaps she could have done differently for her youngest child. Jayden’s significant health issues meant he had nurses around the clock who helped Shelly with his care.
“I had to do what was the best for him. The things I know now … I wish we didn’t have as much nursing care help because it hurt him in another way. He never learned to do things on his own. But, back then, I needed the help. The nurses did everything for him. They loved him like a second parent. As the single mom of three kids, I couldn’t have done it without the nurses, so his whole life was like that.”
How His Story Began
Jayden has endured more health issues due to AEC syndrome than Shelly can even remember. She knew something was wrong the minute he was born. The doctor let her hold him for just a second before the medical team whisked Jayden away.
Shelly’s mom, a nurse, was there for the birth. Shelly could hear her talking with the other nurses about his symptoms.
“As they were taking him away, I was like ‘Wait a minute!’ Physically, I saw nothing different with him at first, other than his skin color was very, very red, and then I went on to hear them say he had a cleft palate, something about the skin on his hands and that his eyelid was fused together. I knew immediately something was wrong. I just knew, and I kept asking. The doctor kept saying, ‘I don’t know,’ and he didn’t.”
Within 24 hours, Jayden was taken to Children’s Hospital of Philadelphia (CHOP). Before their departure, the medical team verbally told Shelly the long list of symptoms that weren’t normal. It was incredibly overwhelming.
“It was just crazy,” Shelly remembers. “To be on baby number three and not think anything was wrong with your pregnancy. I was like, how can you just read off this list to me of all of these things that are wrong? It was really, really hard to hear that and not know what the heck was wrong with your baby.”
Finding a Diagnosis
Fortunately, the doctor at CHOP immediately knew what Jayden had: AEC syndrome. He had treated a baby just like him three months prior. Shelly remembers feeling relief knowing what he had. The doctor told her what he knew about the condition. But none of it sunk in. Understandably, Shelly was on system overload having just given birth 24 hours ago.
The days and weeks to follow are a complete blur as Shelly looks back at that time. Little Jayden was in the ICU and even survived a life-threatening skin infection. His newborn skin had been red because it was sloughing off. Without that layer of protection, skin infections were an ever-present threat.
But, he was and is a fighter.
Giving Him the Best Life
His strong spirit helped him battle the many health issues he would face: feeding tubes, kidney infections from the bladder not functioning correctly, respiratory infections, lung disease and more. The severe skin erosions were especially difficult. They were on his head, feet and fingers, making the skin raw. The erosions were even on his eyes. Sometimes, Jayden had medical issues that Shelly wasn’t sure were related to AEC syndrome or not.
“It’s funny because I wonder, how could I have not found out more about AEC? But his life has been so many years of so many issues. I can look back now that he’s 19, and I see kind of certain patterns and reasons we did what we did. It was always about keeping him at the healthiest we could and giving him the best life we could. You did what you had to do. You didn’t have time to focus on the whys and what caused it.”
Today, Jayden is stronger. He has a creative mind and loves to build elaborate cities out of Legos. Certainly, Jayden endured a lot for someone so young. He’s not just a survivor, he’s thriving and finding his way. He shares his thoughts,
Special Message from Jay
This is for those who struggle and have a hard time accepting this life…who have a hard time smiling. Sometimes to heal, to smile, you have to realize the gift you have and the hero it has made you.
My love for comics and superheroes has taught me that a hero can be defined in many ways. I believe we are all heroes. We have endured and overcome unimaginable things. We have been torn down, we have been in pain, we have been in denial, and we fight every single day of our lives. It is not an easy life but no matter what happens, our special strength, our hope, our will to fight, our smile, can never be taken from us.
We are not weird. We are not different. We are fighters; we are heroes; we are gifted; but most importantly, we are special.
When feeling hopeless or asking, “Why me?,” remember what keeps giving you your strength, why you keep fighting, why your heart keeps beating. Those reasons and the will to push through and never give up make you your own hero.
I hope by sharing part of my story, some people like me can feel comfort and hope. For the first time in my 19 years of life, realizing the gifts that I have been given, I have slowly begun to heal and to smile. Maybe by realizing how brave and strong a hero you truly are you can understand your gift and heal, too.
When it all comes down to it, we must each embrace our own powers, and share our smiles with those we love!
Jayden, you make us smile!
We are grateful to the Pagano family for their support over the years. They have hosted Jayden’s Halloween Hustle, a 5K Run/Walk benefiting the NFED, in the past and plan to do so again in the future.
Give the Gift of a Smile This Year