As Deborah Coleman and her 14-year-old son Jonothan waited to be seated in a local Payson restaurant, children ran around them, laughing loudly and lightheartedly.
Jonothan stood on the far left side of the passageway, gripping the counter with one hand while the other was occupied with a cane.
The quick movements of the children around him seemed to highlight his slow progress. Deborah kept one hand on him as they both advanced to a booth in the corner.
In mid-1992, both were diagnosed with a rare form of muscular dystrophy; Deborah with Kearns-Sayre Syndrome and Jonothan with Pearson's Marrow Pancreas Syndrome, which developed into Kearns-Sayre in 1997.
The primary symptoms of the disease----blindness, external paralysis of the eye muscles, heart blockage and skeletal muscle weakness----have not made life easy on the pair.
Still, Deborah said symptoms are the least of her worries.
"Watching my son go through it is the hardest part," she said. "They're not doing a lot of research on our disease."
And in the case of Kearns-Sayre, no research means no cure, which equals continually progressive symptoms that will lead to premature death.
While this situation may seem thoroughly bleak, Jonothan and Deborah live by a saying that helps them cope with their condition.
"Everything happens for a reason," Deborah said. "We may not know what that reason is, and we sure as hell may not like it, but we know everything happens for a reason. And one day, we will know what that is."
Jonothan ---- clearly taking after his mother ---- is optimistic about his disease and continually involves himself in as many activities as he can, rebelling against the odds as he did when he was first diagnosed with Pearson's Syndrome at the age of 4. Only one-third of children diagnosed with the disease survive.
When Pearson's developed into Kearns-Sayre in 1997, Jonothan's symptoms worsened and he started to go blind. Now, he can only make out vague shapes and colors.
Deborah said the blindness has not disheartened her only son.
"We joke a lot about our illness," she said. "Jonothan is still walking into doorways, but he always says things like, ‘That's going to leave a mark.'"
Jonothan's remarkable sense of humor made him one of the most popular campers at this year's Muscular Dystrophy Association Summer Camp.
He and his best camp friend, 20-year-old Dalen Soto, could barely be separated and even won the Best Camp Friends Award. The pair regularly had other campers and counselors in stitches.
"Dalen is a very cool friend," Jonothan said, smiling. "Dalen started letting me ride on the back of his wheelchair, and after a while, I started calling it the pimpmobile. I was the pimp."
Traci Jones, who was the camp coordinator this year, said Jonothan's sense of humor is often disarming.
"He looks so much younger than what he truly is, sometimes the things that he says just catch you off guard," she said.
As a side-effect of Kearns-Sayre, 14-year-old Jonothan appears to be between seven and 10 years old.
A handsome boy, Jonothan's hair is tow-head blond and spiked. One perceives in him an unshakable confidence looking into his blue eyes surrounded by pale skin. Because of the paralysis of external eye muscles caused by Kearns-Sayre, Jonothan's right eye droops slightly.
Jonothan said that when he started going to Rim Country Middle School three years ago, other students did not tease him in sixth grade as much as they did in his latter two years.
To educate other students about Kearns-Sayre and curb teasing, Jonothan gave hour-long presentations about the disease to his fellow students.
"That right there really opened kids up," Deborah said. "He doesn't get picked on as much as he was."
While school is Jonothan's top priority after family, he said the best part of his year is the MDA summer camp. There, children can relax and enjoy themselves surrounded by other children facing similar difficulties to theirs, Jones said.
"This is really one time out of whole year that they are the norm," Jones added. "They all get to play sports, they all get to earn ‘Best Sportsmanship' and ‘Most Goals.' This is the only time in their life they are ever able to do that kind of stuff. It's such a positive thing for their self-esteem and coping with the disease that they have."
Jonothan said his favorite part of summer camp is playing soccer and participating in the talent show. For the first three years in a row he went to the camp, Jonothan's soccer team won. This year, they placed second.
However, in addition to winning Best Camp Friends Award with Soto, Jonothan won first place in the talent competition after he sang George Strait's "Cross My Heart." Singing has always been a talent of Jonothan's
"He grew up around music," said Deborah, a songwriter. "Last year when sang ‘Don't Laugh At Me' in the talent show, he had everybody in tears."
"A lot of songs I sing let people know that I open my heart just as well as anybody," Jonothan said. "I like (singing) not just because I open my heart, but because I've got a great voice," he added modestly.
Jonothan said that Mark Wills' "Don't Laugh At Me" is one of his favorite songs. The lyrics directly relate to Jonothan's life at school, where he was often teased by fellow classmates.
"Don't laugh at me. Don't call me names. Don't get your pleasure from my pain. In God's eyes, we're all the same. One day we'll all have perfect wings. Don't laugh at me."
Jonothan said that when he enters his freshman year at Payson High School at the end of the month, he will give more presentations about his disease to students in hopes that they won't laugh at him.
Facts about Kearns-Sayre Syndrome
- nset: usually occurs before age 20
- ide effects: In addition to blindness, weakened eye muscles, and heart problems, side effects can include shortened height, hearing loss, inability to coordinate voluntary movements, impaired cognitive dysfunction, and diabetes
- rognosis: varies depending on the severity of the symptoms
- Affected: Doctors think the disease strikes at random, but Jonothan's was inherited from his mother----the first recorded genetic link of Kearns-Sayre in history
Source: the National Institute of Neurological Disorders and Stroke