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

Talk to us

More in Local News

Ciscoe Morris, a longtime horticulturist and gardening expert, will speak at Sorticulture. (Photo provided by Sorticulture)
Get your Sorticulture on: Garden festival returns to downtown Everett

It’s a chance to shop, dance, get gardening tips, throw an axe and look through a big kaleidoscope. Admission is free.

Members of South County Fire practice onboarding and offboarding a hovering Huey helicopter during an interagency disaster response training exercise at Arlington Municipal Airport on Tuesday, June 6, 2023, in Arlington, Washington. The crews learned about and practiced safe entry and exit protocols with crew from Snohomish County Volunteer Search and Rescue before begin given a chance to do a live training. (Ryan Berry / The Herald)
Snohomish, King counties train together for region’s next disaster

Dozens of agencies worked with aviators Tuesday to coordinate a response to a simulated earthquake or tsunami.

Police stand along Linden Street next to orange cones marking pullet casings in a crime scene of a police involved shooting on Friday, May 19, 2023 in Everett, Washington. (Olivia Vanni / The Herald)
Lake Stevens man identified in Everett manhunt, deadly police shooting

Travis Hammons, 34, was killed by officers following a search for an armed wanted man in a north Everett neighborhood.

Funko mascots Freddy Funko roll past on a conveyor belt in the Pop! Factory of the company's new flagship store on Aug. 18, 2017.  (Dan Bates / The Herald)
Lawsuit: Funko misled investors about Arizona move

A shareholder claims Funko’s decision to relocate its distribution center from Everett to Arizona was “disastrous.”

1 stabbed at apartment in Lynnwood

The man, 26, was taken to an Everett hospital with “serious injuries.”

A firefighting helicopter carries a bucket of water from a nearby river to the Bolt Creek Fire on Saturday, Sep. 10, 2022, on U.S. Highway 2 near Index, Washington. (Ryan Berry / The Herald)
Red flag fire warning issued west of Cascades

There are “critical fire weather” conditions due to humidity and wind in the Cascades, according to the National Weather Service.

A house fire damaged two homes around 1:30 a.m. Tuesday, June 6, 2023 in Marysville, Washington. (Photo provided by Marysville Fire District)
Fire burns 2 homes in Marysville, killing 2 dogs

Firefighters responded to a report of a fire north of Lakewood Crossing early Tuesday, finding two houses engulfed in flames.

Multiple signs at Boxcar Park alert park users to a ban on kites at the park “effective immediately” on Wednesday, June 7, 2023 in Everett, Washington. (Olivia Vanni / The Herald)
Everett’s Boxcar Park cuts strings with kite flyers due to power lines

Safety is the reason for the ban at the park with the perfect breeze for kite flying.

Woman claims self-defense in nearly fatal Lynnwood stabbing

The Seattle woman, 35, told officers a man threatened her, so she stabbed him, according to police.

Most Read