Dylan Clark

 

Age: 21

 

Cognitive Age: 9.5 years

 

Therapies: None at this time

 

Schooling: Final Year – Mainstream School

 

Siblings: Duste’ (27), Andrew (stillborn), Drew (23), Dalton (8)

 

Parents: Stacey and Steven

 

Kabuki Symptoms: Dylan presents with all of the typical Kabuki symptoms and problems that come with  the diagnosis.

At the tender age of 21, Dylan just finished his final year of school. Stacey, his mom, is anxious and excited about him being home with her 24/7, but she wouldn’t change a thing. After what they went through to get where they are, Dylan has proven doctors wrong time and again and fought every step of the way to be his own person.

Early in her pregnancy, Stacey says that everything was going along as it should. Then, at just 23 weeks, she became extremely ill. She was given medication, was told she needed to rest and sent was home. She went to the ER six days later, sure something was wrong, but was told it was all in her head and sent home again. Her sister-in-law came to stay with her and help because Stacey was so positive there was something wrong. She called her doctor the next morning and met him at the hospital where Dylan would arrive. After just 24 weeks in utero, Dylan weighed a whopping 2 pounds. Because the town they live in is small, Dylan had to be transported by ambulance to a bigger hospital where they were more equipped to deal with the issues a premature baby can present.

Don’t let Dylan’s early entry into the world fool you, though. After just one week, Dylan came off of the ventilator and began to steadily grow. He spent three agonizing months in the hospital, but was finally able to come home on April 20. He had oxygen and apnea monitors, as well as an NG tube and kangaroo pump, but he was home.

Over the next several years, the Clark’s would watch as Dylan struggled to eat, went through all of the various

therapies and have RSV a number of times. One of the doctors wanted to place a feeding tube, and basically

said it was necessary to keep Dylan alive, so they agreed. Except Dylan’s stomach and intestines are turned

around completely backwards, so when the attempt was made, Dylan’s small intestine was torn away from his

stomach. He required emergency surgery and became extremely ill, something which took him several months

to recover from. So Stacey decided to go with her gut and forego the tube, instead working with Dylan tirelessly

to get him to eat.

The Clark’s went 8 long years without having a diagnosis for Dylan. Well actually, they had a lot of different

diagnoses, but none of them seemed to fit completely. It was only after the Mayo Clinic contacted Stacey about

putting Dylan’s photo on the web, to consult with doctors around the world, that they got their answers. Finally,

a name for what ailed their precious boy! They had a direction, they could seek out other families, and they had

realistic expectations for his life.

 

After 21 years of hard work with Dylan, he has finished school, and even got to attend his high school prom with a fellow Kabuki kid, Katrina Miller. Katrina, whose family will be featured in a later piece, also had Dylan at her prom, and both moms’ describe their relationship as something special. They have a connection. And if you’ve ever seen two Kabuki kids together, then you’ve seen glimpses of what that connection looks like.

Dylan is truly a miracle. By all rights, 21 years ago his survival at 24 weeks gestation was very slim. But Dylan didn’t just beat those odds, he shattered them! Every day he walks around with a smile on his face is proof that miracles do happen.

Dylan’s Favorites: Dylan loves to tinker! He likes MP3 players, stereos, computers, Matchbox and Hot Wheels cars, and anything else he can mess with. He loved turning lights on and off when he was younger, but now mostly does it only in new places. He enjoys playing soccer and basketball, but since moving to a new state, he doesn’t have the Special Olympics opportunities that he had before. He also really likes holiday inflatables. His mom says he has about 26 or 27 of them, and the yard is slowly shrinking! Someday, Dylan hopes to have his own house and get married. To Katrina, of course!

 

Dylan’s Relationship With His Siblings: Dylan’s adult siblings have been really great about helping with Dylan and learning about him. They were always there to watch out for him and protect him, and they still are. His younger sibling, Dalton, has a tougher time understanding what is happening. So he tends to act like a typical little brother and tries to fight with Dylan and make him scream. Stacey says Dalton has figured out what buttons to push and how far he can push them!

Advice for Kabuki families: “Stand your ground. There have been many times in Dylan’s life that I have flat out told a doctor, teacher or therapist “NO” or even ‘fire’ them. We know our kids better than anyone. Our gut feeling is usually the right one. I believe those gut feelings are God telling us something so we should listen. Just because they have a degree it doesn’t make them right.”

Advice for parents of “typical” children: “I think the most important thing I want others to know is that Dylan is just like anyone else. He wants to grow up and be a banker, get married (even though he has no idea why), and have his own house. Even though his ideas of those things are different than what we all think they should be, they are still the same. We all thrive on kindness and pleasant words. The good book says, “Treat others as you wish to be treated”. I think any child with a disability, no matter how great or small, is a precious gift from God and they are a lot closer to him than most. We are all here for a purpose and no one is a mistake or an accident. We may not know what that purpose is but if we follow our hearts we can find it. We are here to be a joy to someone else and that’s what our children do for us. Even if things are difficult sometimes.”

How Dylan has impacted the family: “Dylan’s biological father left us because he couldn’t deal with the medical issues or the fact that Dylan wasn’t a “normal” kid. I was a single parent for 10 years then I meet my husband, Steven. He made the biggest difference in Dylan’s life, all of the kids' lives for that matter. He adopted my 3 older children and we had our youngest together. Steven was able to get Dylan to eat, sleep on his own and just grow as a young man. Do I blame his biological dad for leaving? Sometimes, but I know that it was probably for the best and things happen for a reason. We’ve had our issues has far as Dylan’s behavior and getting his siblings to understand he’s not doing it to be naughty. That’s hard to get our youngest to understand. Just because Dylan is 21 years old doesn’t mean he is going to act like a 21 year old. Tough concept.”

 

Dylan, like most Kabuki kids, had a really rough start to his life. His chances of survival at birth were slim, but he beat them. Stacey was told about milestones that he would never reach, but Dylan decided that the doctors weren’t going to tell him what he can and cannot do, and with his mom’s help, he passed many milestones he was never supposed to reach. He’s an adult now, and while he may never live on his own, he definitely has his own dreams and aspirations.

The Clark family story is one of strength, determination and perseverance. It’s a story that will make you realize that you CAN do it, that nothing is impossible, and that through God, all things are possible.

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome. 

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