WS Chronicle

By Busta Brown

On May 24, 1997, Khye Jessup was born. “When he was six months, I knew something was wrong,” said Khye’s mother, Shelley Caryn. 

After many doctors’ visits, Shelley’s intuition was correct. Something was wrong. “When he was almost two years old, I took him to see a geneticist. She took one look at Khye and said he has a genetic disease. After they did the blood work, she told me it was Hunter’s Syndrome,” said Shelley. 

Hunter’s Syndrome is a rare disease in which the body is missing or does not have enough of an enzyme needed to break down long chains of sugar molecules. The doctor told Shelley what to expect and it wasn’t good news. “He was at a 15-month-old level when he was almost two. He would continue to learn new words and would be mobile, but he’ll eventually slow down and stop learning anything new. Then he’ll start going backwards and losing skills like the ability to talk and walk,’’ shared Shelley. 

The doctors told Shelley that Khye’s life expectancy would be between eight and ten years old. After receiving the news, the mother of two had a surprising response. “I was a little bit relieved, because so many people were brushing me off, and I knew something was wrong. So, when I received the diagnosis, I felt like somebody finally heard me. Now I know what’s wrong.” 

But eventually it all sunk in. “The more the doctor explained what the disease was and how things were going to be, of course that was devastating what was going to happen to my child,” said an emotional Shelley Caryn.

After Shelley left the hospital, she decided giving up was not an option. “I heard what the doctor said, but I decided to keep moving forward and give him the best quality of life,” said Shelley. 

What motivates the full-time nurse is the heartwarming song by Kirk Franklin, “Lean On Me.” “I was pregnant when that song was out. There’s a part that says, ‘Oh, there’s a child who is sick and begging to be free. But there is no cure for his disease. He looks up to his mother and as she holds his hand, praying that someday the sun will shine again.’ Every time I heard it, I would burst out in tears, because for some reason I knew I was going to have that experience,” she said while holding back her tears. 

As she was talking, I could hear the chorus in my head: “I am here, you don’t have to worry, I can see your tears. I’ll be there in a hurry when you call. Friends are there to catch you when you fall. Here’s my shoulder, you can lean on me.” The lyrics are the perfect soundtrack for this wonderful love story. I’ve always believed that love is the best medicine for any disease or emotional pain. Shelley’s love for Khye is 100% proof. 

The dynamic duo defied all odds, according to the doctor’s analysis and a few naysayers. Khye graduated from Ragsdale High school in Greensboro and he also went to his prom. “It was the same year he got his feeding tube, so the administration felt it would be best that he attend another school that could give him more one-on-one attention. But I was determined to make sure he graduated at that school, with his graduating class, not a separate ceremony.”

The handsome high school senior did walk across the stage to receive his high school diploma. “I had to fight for it, but he did it, and it was all worth it,” said the proud mother.

Khye is now 26, and the doctor’s analysis on his health was correct. He did go backwards and lose the ability to walk, talk and eat on his own. But he didn’t lose the ability to love and feel loved. “When people see him, they think he can’t do anything. But I can see it in his eyes. When he is out in the community, he enjoys the interaction. Even though he’s not responding, he’s still in there, and he appreciates these interactions,” shared a smiling and joyful Shelley. 

When the 26-year-old was a child, he loved sports and was very active. “He loved balls. He had such a good throw, and I felt like if he didn’t have this disease, he could have played professional baseball. Now that he’s no longer mobile, I make sure he continues to play baseball. I make sure his feet tag all of the bases, and also do all of the other fun things he enjoys. I’m going to do my best to make life great for him. I don’t want Khye to be treated any differently because of his disease,” said Shelley. 

But in reality, people do treat children and adults differently when they have special needs. Because of her loving spirit and positive outlook on life, Shelley noticed the reason children treated Khye differently is because of lack of education, So, she wrote a children’s book entitled, “There’s A Little Boy In My Class But I Don’t Know His Name.” 

“When kids see their classmate in a wheelchair, or have a facial feature that’s unfamiliar, they’re scared of them and don’t know how to interact. So, I decided to write this book to help children get over that fear. When I would take Khye to vacation Bible study, the kids would be scared to communicate with him. When I explained to them that he can’t talk, he still likes to play. By the end of the week, the kids were more comfortable and they did play with him.”

The author said she wrote the book based on her son’s real-life experiences. “It’s good to start early teaching children about children with disabilities, showing them exactly what to do,” said Shelley. My favorite part in the book is when a little boy finally says hi to his classmate with disabilities. Although he couldn’t talk back, he continued talking to him and would go get toys and they played together. It’s a great book! Every household and classroom needs “There’s A Little Boy In My Class, But I Don’t Know His Name: A book about friendship and inclusion.”

“It’s time to start this conversation. When we went to vacation Bible schools at different churches, a little girl asked for my phone number, so I asked why. She said, so I can come over to play with Khye. It was so sweet. It’s amazing the questions the kids ask me.” 

I asked the motivational speaker what quote gives her strength. “Do it scared! Even if you feel that you’re not qualified to do something, or just nervous about it, do it anyway.” 

My phenomenal Person of the Week is Shelley Caryn. The book can be purchased at Amazon, Barnes and Noble, and Next Chapter Bookstore at Ben’s Boyz in Greensboro.