Corey Mort wrapped his arms tightly around Wanietta Stuckey. He hugged her close, smiled and placed big kisses on her cheek as a photographer snapped their picture.
Can we do a regular one? Stuckey asks her son, wanting a more traditional portrait.
No. Mort is firm, and he kisses her cheek again.
I want you to sit like a 25-year-old, Stuckey says.
Mort continues, holding his mother’s hand, kissing her fingers interlocked with his own.
You’re such a cuckoo butt, Stuckey says. I love you.
The exchange might not be what is expected between a mother and her 25-year-old son, but then, Stuckey and Mort have been through a lot together. It is clear that Stuckey’s life is intricately wrapped in her son – and her son’s with Stuckey.
Mort has Chromosome 6 Ring, which is classified as a rare disorder and varies by case. Some with the disorder have minimal physical abnormalities and normal intelligence. Others, like Mort, can suffer from mild to severe mental retardation and have a host of physical problems.
When Mort was diagnosed, there were no specific groups to provide parents with information and support. Stuckey had to learn most information on her own and deal with her son’s disease by herself. This is often the case for parents whose children are diagnosed with rare diseases. It can be difficult to find experts or specialists, and it is hard to find doctors with such an acute specialty.
But Stuckey did what she had to do for her child.
He made me who I am, she says. Everybody who meets him loves him, and I figure that’s why he’s here.
Doctors are confronted with rare cases like Mort’s more often than one might expect, says Dr. Patricia Bader, a geneticist at the Northeast Indiana Genetic Counseling Center.
I think it’s very important to be honest, to say, This is what I know about this. I don’t know very much at this particular moment. I only know what I’ve been able to learn from a couple sources, but that doesn’t mean that’s all I’m ever going to know. I will find out more,’ she says.
Stuckey received her son’s diagnosis when he was 3 months old.
When (the doctor) told us what it was, she printed the only information she could get: one paragraph, five lines, Stuckey says.
After Mort was born he would scream every time he had his diaper changed, Stuckey says. Stuckey took him to a general-practice doctor, who said Mort was just colicky. But when it didn’t stop, Stuckey took him to a pediatrician.
She just looked at him and said, Something’s not right,’ Stuckey remembers. He did look kind of weird. He just was not cute. You know how everybody says, Oh, what a cute baby!’? Nobody said that.
The pediatrician diagnosed an umbilical hernia, another in the groin and a dislocated hip, Stuckey says. She then suspected another issue based on his hand, which he typically kept clenched in a tight little fist. On his palm, the doctor found a Simian crease, an unbroken line that stretches across the top part of the palm that can be a sign of developmental disabilities. The doctor ordered tests that diagnosed Mort’s Chromosome 6 Ring.
As Stuckey explains it, chromosomes are squiggly lines, and each end is free. On Mort’s Chromosome 6, one end is curled up and attached to itself. To better explain, if a person made an OK sign with his hand and then moved the thumb to the knuckle of the pointer finger, that is how Mort’s chromosome is shaped, and the additional material outside the loop is deleted.
Doctors repaired the hernias immediately. The next day, Mort had surgery for his dislocated hip, and the 3-month-old baby was put into a body cast. His hip dislocated because Mort’s pelvic girdle, the bone the hips fit into, is flipped and there is no socket on one side.
In conjunction with Mort’s Chromosome 6 Ring, Stuckey also learned that her son would likely not live to be 1 year old.
She said if he does live longer, he’ll never walk, and then I cried, and then I got angry, and then I was blaming God, she says.
In 2009, the University of Kansas Hospital reported that 23 cases of Chromosome 6 Ring had been reported in medical literature. Stuckey questions that number because the symptoms of Chromosome 6 Ring vary; she wonders whether the disorder might not get misdiagnosed as something like cerebral palsy or autism.
Years ago, through her church, Stuckey met a woman in Warsaw who had a son with the same diagnosis as Mort’s. The women have not kept in touch, Stuckey says, but she talks about how different the two cases were: The other child could not walk or see.
Because Chromosome 6 Ring is so rare, there is no treatment. Doctors are instead left to treat those varying symptoms, says Bader, the geneticist. The best thing for a parent to do is to put together a team of experts to address the different symptoms, such as a pediatric eye doctor for eye problems and a pediatrician with experience in feeding problems like failure to thrive, Bader says. Mort has failure to thrive, a condition where the patient is unable to retain or use calories to grow. As a result he is small in stature.
He’s puny, Stuckey says. He’s got a little, tiny head.
Even though little may be known about some rare diseases, Bader stresses that parents and patients stay proactive in continuing to learn as much as possible. She also points out that the most important thing is to get each patient the help he or she needs.
Each child or patient is different, and medicine is continuing to expand, Bader says. I think it’s important to keep trying to learn about what you can and what’s going on in these conditions and keep focusing on daily functioning. What you want for your child is as close to normal functioning as possible.
Since Mort’s diagnosis, more literature has come out, especially from the National Organization of Rare Disorders. Plus, advances in the Internet have made research more successful, Stuckey says.
For Stuckey, not having support or research groups wasn’t a detriment, she says.
I just have that attitude that I’m going to do whatever I can for my child, and I became his best advocate, she says. If there was nothing, I would search for things. I had a pretty good support in my family, so that if I needed a break, I had family members that would help me with caring for him.
Moving out at 18
Mort is talkative, though it can be difficult to understand him.
He was raised Lutheran but says he is Catholic. He taught himself the rosary and hangs crucifixes in his room.
He says his favorite TV show is EWTN, which is part of the Global Catholic Television Network. He loves Peyton Manning and characters from Beauty and the Beast.
Mort also walks, even though doctors said he never would. He struts with a shuffled gait, and he runs. Despite his flipped pelvic girdle, he has not had a dislocated hip since he was a baby.
Since Mort was 18, he has lived apart from his mother. Stuckey knew she wanted her son to move out of the house when he was an adult, like his older brother did, but she worried someone else wouldn’t take as good care of him as she could.
Shortly before Mort’s 18th birthday, Fort Wayne-based AWS contacted Stuckey about Mort spending a few nights in a group home as a trial run. AWS is a national group that aims to help children and adults with disabilities live as independently as possible.
He loved it and thought it was the coolest thing in the world, Stuckey says, and I didn’t. They wanted to take my baby.
Mort eventually moved in permanently. Shortly after her son moved into the group home, Stuckey married her longtime boyfriend.
Today, Stuckey is working on her doctorate in education from Ball State. She travels to Muncie once or twice a week for classes. When she graduates, she wants to open a facility for young people with disabilities between the ages of 12 and 22.
Children younger than 12 can go to child care if they have to miss school, and adults older than 22 can go to a nursing home, Stuckey says. But for that decade in between, there’s nowhere else to go.
Today, Mort is thriving in the group home. He can set the table, moving in his slow shuffle, carefully placing each utensil in its appropriate place at the side of the dinner plate. He can help cook dinner. He has a new roommate, and he went bowling for his birthday party last month.
He turned 25 on March 15. Stuckey thinks that may make him the oldest living person with Chromosome 6 Ring.
It’s quite a feat for a boy who was never supposed to make it past a year old.