Everett boy says his fight against rare disease has helped him mature

EVERETT — Although Cody Hendrickson looks like any other 15-year-old, his eyes betray that he already has learned what it means to be different.

The tall Everett boy has pitch-black curls and likes music and video games. He was born with a rare illness called Beckwith-Wiedemann syndrome.

The genetic disorder can result in abnormal growth and is associated with oversized body parts and organs. Many people with the syndrome have an enlarged tongue and low blood sugar. Often one side of a person’s body grows larger than the other.

Children born with the condition usually are larger and weigh significantly more than other babies. Cody, for example, was 11 pounds at birth even though he was nearly a month premature, his mom Cheryl Hendrickson said.

In addition to these physical features, young children who suffer from the syndrome are prone to some types of cancers and kidney problems, Hendrickson said.

The “good” thing about the syndrome is that children often grow into their large organs and body parts, which is pretty much what has happened with Cody, she said.

“He’s had his share” of challenges, Hendrickson said. “And looking at him you would never know.”

Indeed, not many of Cody’s high school friends know that when he was in elementary school, one of his legs was noticeably shorter than the other, and he had to wear a shoe lift.

Cody said he remembers sitting and watching his friends play during recess and not being able to join them.

Many things have changed since then.

Cody underwent surgery to make his legs more equal in length. He can walk long distances now, and his legs don’t hurt anymore.

He had two other major surgeries: one to reduce the size of his tongue, the other to reduce his pancreas.

There is more to come, but Cody and his family know they will be able to deal with any medical issues together.

The entire family has always been extremely supportive of Cody. Feeling that she can make a difference, Hendrickson started a foundation to help other families across the world who are affected by the syndrome.

Through the foundation, Hendrickson has arranged for dozens of children to come to the United States to get surgeries that may not be available in their home countries. An entire wall in her home office is covered with pictures of smiling children from Canada, Romania, Turkey, Ecuador and other countries.

Most of these pictures tell similar stories.

“We call them ‘Beckwith babies,’ ” Hendrickson said, referring to similar physical features shared by the children.

The foundation also helps organize conferences to raise awareness about the illness and create a sense of community.

“There are so many families who travel great distances just to meet people who can honestly say: ‘I know what you are going through,’ ” Hendrickson said.

Cody’s family also has had help. He recently got a gift — a therapeutic hot tub donated by a company called ThermoSpas. The donation came through the company’s special program, which provides hot tubs to children who need them for therapy.

Cody outgrew some of his difficulties. Others merely became invisible over the years, like the hearing aids Cody has been wearing since third grade.

Hendrickson said that very first device came with a remote control, allowing Cody to turn things on and off. Eyes shining with tears, she recalled how her son turned the aids on for the first time when he was outside. “His eyes widened with excitement at all the things he was hearing.”

Her son doesn’t take things for granted, Hendrickson said.

“Sometimes I feel more grown up,” Cody said. “It’s just the way I think stuff through, I guess.”

Cody said he wants to go to the Art Institute of Seattle after high school and become a filmmaker.

Cody is still a sophomore, so meanwhile he draws and gains inspiration from films such as “Edward Scissorhands.” He also writes short stories about people who don’t fit in perfectly, kind of like Cody himself. “They are characters you wouldn’t expect to be main characters,” he said.

Cody said not being like everybody else has been hard at times. “I still feel different, but I’m fine with it now. I just want to be me.”

Cody has come a long way, and a big part of his journey has been acknowledging that he will always have to live with the illness, Hendrickson said.

Most people probably wouldn’t know that he lives with back spasms, or wears a brace or makes frequent visits to the hospital. Also hidden from view is his mysterious strength.

Reporter Katya Yefimova: 425-339-3452 or kyefimova@heraldnet.com