Hardaway High School student overcomes Nager Syndrome, writes inspirational 'Laws of Life' essay

mrice@ledger-enquirer.comJuly 7, 2013 

John Phillips was so impressed with Will Johnson and the "Laws of Life" essay he wrote, the Muscogee County School District interim superintendent invited the Hardaway High School student to read his inspiring words at the May school board meeting.

The rising sophomore received a standing ovation.

"He's thankful for being himself regardless of his handicapped condition," Phillips said. "… It got my attention, not only in my mind but also my heart and soul."

Will, 15, was born with Nager Syndrome, a rare condition that affects development mostly of the face, arms and hands. Will's father, Jeff Johnson, said doctors told them "he wasn't going to live much longer after his lungs collapsed when he was a couple days old. But here we are today, and he's a blessing to everybody."

Will was born on Christmas Eve and didn't come home from the hospital until four weeks later, said his mother, Amy Kennedy.

Doctors implanted an artificial trachea (which he still has) to help him breathe and a gastronomy tube (which was removed at age 4) to help him eat. He has had six surgeries to expand his recessed jaw. He has no thumbs, short arms, narrow ear canals and a cleft palate.

So he has trouble speaking and hearing, but his spirit has soared above his physical challenges.

"He's always positive about everything," his mother said. "We haven't had to really force that at all."

Nager Syndrome doesn't affect a person's intellect, so Will has been in regular-education classes at Johnson Elementary, Richards Middle and Hardaway High.

"He wants to be as mainstream as possible," his father said.

Hardaway principal Matt Bell remarked how well Will fits in at school.

"He mixes it up in the hallway and wants to be treated like everyone else," he said.

Which doesn't surprise Bell, who remembers Will as a preschooler at an Easter egg hunt.

"I was thinking, 'Gosh, he's got a lot of challenges.' But they started the hunt, and he's knocking people out of the way," Bell said. "So it's neat that he came to Hardaway and to see him still pretty tough and resilient.

Will keeps a Christmas tree decorated year-round in his room. He he likes computers and model trains and rock music. He posts YouTube videos of himself playing mock guitar. His latest hit is AC/DC's "Thunderstruck."

"I think he tests the limits of his parents a little bit -- like a typical teenage boy -- but he's an outstanding citizen here, let me tell you," Bell said. "He's very polite."

Will's will to live a joyful life oozes into his church as well. The Rev. Brandon Strozier, the student minister at First Baptist Church of Columbus, noted Will helped make his peers feel comfortable asking questions about his condition when he joined the youth group in sixth grade.

"Before that, everyone was kind of really uncertain how to treat him and how to be around him," Strozier said. "But since we've gotten to know him, I've never known anyone who lives like him, like their disabilities don't exist."

Strozier recalled when the youth group discussed how to deal with disadvantages and Will took that chance to share his testimony.

"His disability has become secondary to his nature and faith," Strozier said.

Will's advice to those who feel sorry for themselves is simple: "At least you have something. There are some people who don't have anything."

NAGER SYNDROME

Nager Syndrome, (acrofacial dysostosis) is a rare genetic condition involving physical anomalies. There is usually some level of hearing loss, which can range from moderate to severe.

The facial characteristics include downward slanting palpebral fissures (eyelids), absence or underdeveloped lower jaw, malformed outer and middle ears (from mild to total absence), clefting of hard or soft palates, absence of lower eyelashes, and scalp hair extending on to cheek.

Upper limb defects include underdeveloped or missing thumbs and occasional absence of the radial limb. Other limb anomalies such as limitations of elbow extension may occur. Legs and toes may also be affected. Some internal anomalies exist including stomach or kidney reflux. The severity of the syndrome varies.

There have been fewer than 200 documented cases of Nager Syndrome worldwide.

Medical intervention at birth is usually required for survival due to a need for intubation to aid in breathing. Most children require some sort of supplemental feeding mechanism due to the presence of a cleft and/or the narrow airway interfering with proper swallowing. Most affected individuals benefit from feeding therapy.

The inheritance pattern for Nager Syndrome is debatable as cases of both dominant and autosomal recessive inheritance have been identified.

Source: The Foundation for Nager and Miller Syndromes.

WILL JOHNSON'S "LAWS OF LIFE" ESSAY

Note: Will Johnson, a rising sophomore at Hardaway High School, is one of the 152 school-level winners among nearly 40,000 entrants in the 2012-13 Georgia Laws of Life Essay Contest, conducted by the Georgia Rotary Districts Character Education Program Inc. The contest asks students to select a saying that expresses a "Law of Life" and to use that saying in an essay. Here is Will's essay:I have learned that people are often upset about what they don't have, so they waste what they do have.

Ken Keyes said, "To be upset over what you don't have is to waste what you do have."

When I was born there were some things that I didn't have. I couldn't breathe on my own and had to have a tracheotomy. I couldn't hear as my ear canals were blocked. I was also born without thumbs. None of these disabilities have stopped me from being thankful for the things I do have.

I was born with Nager's Syndrome (Also called Nager's Miller Syndrome). The symptoms are an underdeveloped jaw which means the tongue blocks the airway, short arms, absence of thumbs, and narrow ear canals to list a few of the issues.

I am 15 years old and I still have my trache, even though I have had six jaw expansion surgeries. It was hard for people to understand me when I talked. (I also have a cleft palate.). I could have let this upset me and just not talked, but I wanted to talk to people. A lot of times I had to say things more than once or explain things, but I never stopped talking.

Then, when I was in 6th grade I got a cap for my trache. I tell people I was like a turtle coming out of its shell! Now people understood me and I was less shy about talking. I didn't have a normal voice, but I sure was glad to have the voice I did. I have never wasted my voice!

I wear a hearing aid to help me hear better. Rather than being upset about not hearing, I am thankful for the hearing I do have. My ear canals are so narrow I can't wear a regular hearing aid, but I have a special device that goes on my head and behind my ear.

Hearing specialists have provided me with what I need to be able to hear. I still can't tell what direction the sound is coming from but I still guess. Most of the time I'm right, but sometimes I'm wrong.

My biggest challenge is being born without thumbs. The hardest thing has been learning to tie my shoes. My short arms have fused elbows which make some tasks difficult like reaching for high objects or holding on to things.

When I talked to my church youth group they asked me if I always wanted to have thumbs and I said "no, because if I did I wouldn't know how to use them … I've already adapted."

I'm thankful for how God created me. If I had spent my life being upset over what I don't have, my life wouldn't be useful. I don't want to waste a single day or ability that I do have. I will continue to work on challenges and get stronger every day.

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