You’ve probably seen Shelly King and her two daughters around town before. Shelly doesn’t have hair. Neither do her daughters Mattison and Grace.
“It’s kind of hard to forget the girl without hair,” said Shelly. “I’ll be at the store and someone I don’t know will wave and say, ‘Hi Shelly.’ “I just wave and say ‘Hi’ back.”
A lot of people think Shelly and her daughters have cancer, but they were actually born with a rare disorder called Hay-Wells syndrome. Hay-Wells syndrome is also known as Ankyloblepharon-ectodermal dysplasia-cleft lip/palate (AEC) syndrome. It is a rare disorder characterized by a variety of symptoms that can affect the skin, hair, nails, teeth, certain glands, and the hands and feet, according to NORD.
A lot of people seem to know Shelly, but they don’t know her story. They don’t know everything Shelly’s had to go through to get to where she is today. There was hardly anything known about Hay-Wells syndrome when Shelly was born in 1987.
“We didn’t even know she had it until she was born,” said Shelly’s father, Attison Huckobey.
Her diagnosis was changed five times before she was discharged from the hospital. The doctor who delivered her was just as scared as her parents were, and knew nothing about her rare condition.
When she was born, Shelly had a cleft lip. Because her eyes wouldn’t shut, she had experimental corrective surgery where skin was taken from behind her ear and put on her eyelids so that she could close her eyes. She was also born without a left eardrum and without sweat glands. She developed burns all over her head and body when she was exposed to the air.
“When she came out,” said her father, “it’s just like her whole body was blistered. It’s like she had been scolded with hot water. The skin was all loose and little pus pockets had come up on it.”
One of the biggest struggles for Shelly as a baby was eating. She would choke every time she ate. This was one of the many complications that Shelly faced as a child.
“It was pitiful,” said her father. “They didn’t have the G-tubes like they have now. She’d strangle with every bite and just have to get past it. Then we’d have to do it to her again.”
Shelly was treated the same as her brothers and sisters at home, although she was very sheltered. She couldn’t play baseball or other sports or go outside if it was hot, because she didn’t have sweat glands and would overheat. The way she looked was never an issue until she was out in public.
“I got teased and made fun of,” said Shelly. “Kids would look at me and cry. So it literally just kind of crushes your confidence and self-esteem.”
Because Hay-Wells Syndrome is such a rare disorder, Shelly and her family were faced with overcoming many struggles on their own and without proper support. This put a big emotional strain on her family, as when Shelly was just a baby, her doctor informed her parents that she would not live to be past 18 years old.
Shelly recalled a time when she was only 8 years old. It was right after her house had burned down. She and her family were staying at a cousin’s house when she just happened to meet someone else who had Hay-Wells syndrome.
“It was December 15th of 1995.” Shelly recalls.
A lady and her daughter came by to drop off food and clothes. There was an article about the fire in the paper, so they knew where her family was staying.
“Her daughter had my condition,” said Shelly, “and I remember having so much hope. She was 16 at the time. It was so ironic too because her name was also Shelly.”
That was the only person with Hay-Wells Syndrome that Shelly and her parents have ever met. She was about to be 17 years old when Shelly met her and she was in good physical health. To see her doing so well, it gave Shelly’s parents a sense of relief. It gave them hope that maybe Shelly would live to be older than 18.
When Shelly turned 18 years old, she got a tattoo of an hourglass with a number 53 inside of it. Fifty-three is a representation of the number of corrective surgeries that she’s had to have because of her condition, all of which she had before her 18th birthday.
“The hourglass tattoo represents the passing of time in a very hard time of my life when it was filled with surgeries and hospital stays, and a lack of acceptance of myself,” said Shelly. “At that point I was coming to an end of all the surgeries and I was to a point where I wanted to work on myself, starting with the acceptance that just because I was different didn’t mean I wasn’t beautiful.”
Shelly is now 34 years old. She’s married to a loving husband and has two children. She and her husband David, 37, met when they were working at Songbird Lodge together in 2009.
David fell in love with Shelly after only three dates. When I asked him how he knew that he was in love he said, “She was just very sure of herself and confident.”
But it didn’t used to be that way. Shelly struggled with her confidence as an adult.
It was during a time of deep self reflection at the age of 23 when Shelly decided that she was tired of accepting poor treatment because she felt like she was not worth it.
“I just decided that I was done feeling like I don’t deserve anything better. I was just done,” said Shelly. “I was going to just find out who I was as a person. And if I was meant to get married, I would find the right person and it didn’t really matter.”
Six months after Shelly and David met, they were married and were already discussing the possibility of children.
A lot of serious conversations were had before they chose to try to get pregnant with their first child, Mattison. There was a 50-50 chance that Shelly could pass her condition on to her children.
David had stressed to Shelly that he would love their children no matter what, even if they didn’t have hair. But Shelly’s concerns were much greater than David’s.
“David only knew me after the surgeries and all the complications,” said Shelly. “He didn’t realize the seriousness of it because he hadn’t been through it yet.”
After a lot of discussion, Shelly and David decided to have a baby.
Shelly’s parents were there when they saw the first sonogram of Madison.
“They all started crying, and I was clueless. I was like, why is everybody crying?”
Shelly and her parents knew that Mattison was presenting the same symptoms that Shelly had, indicating that she would be born with Hay-Wells Syndrome. It was a very emotional moment for Shelly and her parents because they had all been through it before. They were all too familiar with the struggles that Mattison would be facing.
Thankfully, Mattison’s condition was not as severe as Shelly’s was. So far, Mattison has only had to have eight corrective surgeries. Shelly and David had Grace, their second child, only 11 months after having Mattison. She was somewhat unplanned. Before Shelly even found out that she was pregnant with Grace, she was feeling unsure of having another child because of the emotional strain and all the doctors appointments and surgeries.
“God had other plans,” said Shelly.
Today, Mattison is 8 years old and Grace is 7. Life has been a little easier for Shelly’s girls than it was for her growing up.
“Nowadays, it’s more commended to be kind to people who are different,” said Shelly.
When I asked Shelly what her hopes and dreams are for her children’s futures, she said, “That it doesn’t take them as long to love themselves as it took me to love myself.”
She has hopes that the walls of communication will be let down between her children and those around them. She wants people to ask questions. No one ever asked Shelly questions. When she was growing up, people would just stare. They were afraid of her because she was different.
Elvia Rodriguez is one of Shelly’s closest friends. They met when Elvia was doing CNA training at Songbird Lodge. Shelly was the trainer and she had just finished a training session.
“When the rest of the class walked off, I asked her, do you have cancer or something? I’m very blunt. It kind of just came out,” said Elvia. “She started cracking up and then I started cracking up, and that was it.”
Elvia and Shelly became friends because Elvia wasn’t afraid to ask questions. Asking questions opened up the door to a 12-year long friendship.
“A lot of people make assumptions,” said Shelly. “Asking questions forms a sense of comfort. It shows both sides that the only real difference between them is hair.”
I then asked Shelly what people don’t see when they see her.
“That’s hard,” said Shelly. “When people see me they see no hair.”
“But what do people not see?” I asked
“I feel like they don’t see me,” said Shelly. “They don’t see the real me. They don’t see how fun I can be. They don’t see that I love deeply. And they don’t see how hard I worked to get the things that I have. They don’t see how far I’ve come from where I used to be.”
Shelly and David and their two children live in Brownwood. Shelly is the Office Manager at Breezeway Townhomes in Early and David works for the City of Brownwood.
* Story by Kelly Congdon / Special Contributor to BrownwoodNews.com