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Twins deal with congenital disorder on daily basisPublished October 17, 2013 at 12:00 a.m.
Tawny Mullins sits with her 17-year-old twin daughters, MaKayla, left, and MaRiah. The girls have been teased for their physical differences, caused by Larsen syndrome, a congenital disorder. Mullins has some of the same health problems as her daughters and has undergone 31 surgeries.
VILONIA MaKayla and MaRiah Mullins of Vilonia are mirror-image twins. They look alike, talk alike and share each other’s pain.
The twins were born Sept. 18, 1996, at 26 weeks with a rare congenital disorder called Larsen syndrome. As a result, the girls have several health issues, including cardiovascular and joint abnormalities.
Now 17 years old, both are short, about 4 feet tall.
At birth, MaRiah was the larger twin. She weighed 2 pounds, 8 ounces. MaKayla weighed only about 2 pounds. Within an hour, Tawny Mullins, their mother, said, both dropped several ounces, and so did their chances for survival. She was told MaKayla had a 50 percent chance, and MaRiah’s chances were 20 percent.
“Preemie diapers were too big,” Mullins said. “We had to dress them in baby-doll clothes. They would literally fit in the palm of your hand.”
After a month’s stay in the hospital, the twins were sent home. In the years to follow, there were multiple doctor’s appointments and 10 surgeries.
They each have hip problems, and each has one leg shorter than the other, resulting in difficulty walking. Sometimes, they struggle and fall, but they say they will never give up in the march to follow their dreams.
They are 10th-graders at Vilonia High School and perform in the marching band, and they are members of the school’s archery team. Speaking in stereo, they said being a part of something “means so much to us.”
They have daily pain, Mullins said, “but they resist pain medication. They go past the pain to do whatever they want to do.”
Mullins talked about her daughters’ “twin connection.” If one has a headache, she said, you can count on the other one developing one as well. And both girls have to get headache medication for one of them to feel better.
However, they have different likes and personalities. MaRiah is aggressive and outgoing and loves dark colors, Mullins said. MaKayla is passive and likes bright colors. MaKayla is left-handed, and MaRiah is right-handed.
The twins inherited Larsen syndrome from their mother.
Mullins suffers with health problems similar to her daughters’, and she has had 31 surgeries. She has been told the twins will require more surgeries in the near future. Some weeks, it is back-to-back doctor’s appointments for the family. They have seen as many as nine doctors in one day, each specializing in a different field of medicine.
The twins also inherited some of their mother’s personality traits.
“I have a stubborn streak, and they inherited that from me,” Mullins said.
Being stubborn, she said, is a key to survival in “our world.”
“I am one of the most stubborn people you will ever meet,” Mullins said. “I have been rock climbing. I was a certified firefighter, a storm spotter, a first responder. I can work on my own vehicle if I need to. Yes, I drive. If someone tells me that I can’t do something, all of a sudden, that is what I feel the need to do.”
At times, the twins’ pain is severe, and it restricts their mobility, so the girls use their wheelchairs or scooters to get around. On that note, they laughed loudly while telling about riding their scooters during the summer from their house about three miles to the city library, a McDonald’s restaurant and shopping destinations.
“We don’t have to have a license for that,” MaRiah said, joking. “We haven’t been pulled over yet, anyway.”
Physical pain is not the only kind the family endures. They must also deal with some harassment.The twins have been bullied by “people who don’t understand us,” MaRiah said. Sometimes, their 13-year-old brother, J.J. Cherry, runs interference for them, she said.
“He gets teased and bullied because of us and our mother. A lot of people make fun of us,” MaRiah said. “Some think if they touch us, they are going to get what we have.”
The twins struggled when revealing some hurtful details. MaRiah was dumped from her wheelchair and left in the floor to get up without any assistance.
“That was very embarrassing,” she said.
When MaKayla was in the fourth grade, she was hit in the back with a basketball, which knocked her out of her wheelchair.
Mullins said MaRiah experienced a severe bout of depression when she was 8 or 9 years old.
“She gave up on trying to walk,” Mullins said. “I tried a little reverse psychology on her. I took her wheelchair from her. It made her so mad, she would hardly talk to me for two weeks, but it worked.”
When the time came for school, it was easier to home-school the twins, Mullins said.
“I also wanted to keep them close to me, too, and keep people from hurting them,” Mullins said. “I know that pain.”
Searching for a fit, Mullins and her husband, Philip, have moved around, enrolling their daughters in nine school districts. A couple of the schools, MaKayla said, weren’t handicapped-accessible. Others, she said, “didn’t want us.” The twins, now 10th-graders, hope to graduate from the Vilonia School District.
“This district is by far one of the best ones we have come across,” Mullins said.
The girls said their immediate thoughts have to do with getting their driver’s licenses.
“They are just normal teenagers,” Mullins said. “They know everything, and they are hounding me about getting their driver’s licenses.”
They also gossip, argue, talk about music, makeup, hair, nails and shoes. MaKayla, their mother said, is fascinated with shoes.
“She wants to wear 5-inch stilettos,” MaRiah said, pointing to her sister. On that note, the two talked briefly about what they would wear to the homecoming dance, scheduled for that night. MaKayla said she was determined to find some gold shoes.
Next school year, the twins plan to try out for the bowling team, swimming team and, perhaps, drum major.
Life for them after graduating from high school, the twins said, will include college and a career. They are considering
being physical therapists and musicians. MaRiah also is thinking about becoming a psychologist and MaKayla an artist. They also plan to get married and have children.
The girls said they take comfort in a piece of advice given to them by their mother.
“She told us we have to find our own way,” MaRiah said. “We can do stuff and plenty of stuff, but it has to be the way we can do it. That’s what we are doing.”
Turning toward her daughters, Mullins said, “Don’t forget what I told you about forgiveness. You just treat everyone the way you want to be treated. Forgive those who don’t treat you that way. It’s more for you than for them.”