Queen Creek Youth Battling Rare Disorder Does Not Let Disease Rule His World

Campbell Faulkner, front center, receives a wealth of support from his family, clockwise from top left: mom Carrie, dad Shane and siblings Carsten and Sage. His brother Clayton was not able to attend the photo shoot. (Independent Newspapers/Wendy Miller)

Jun 29th, 2016 · by

Campbell Faulkner has been through more struggles in his 10 short years than many of his fourth-grade peers will experience in a lifetime. Diagnosed with a rare form of mitochondrial disease, Campbell struggles to stand and walk for extended periods of time and has difficulty gaining and maintaining a healthy weight. Two feeding tubes in his stomach provide him with extra nutrition and help him use the restroom.

But this Queen Creek youngster is anything but a sick kid. Far from it. Campbell is proof that having the right support system to deal with all the bad stuff the world throws at you can produce a really neat kid who is living a remarkable life.

Campbell’s health is the No. 1 priority for him and his family. Throughout the day, Campbell needs constant care to monitor his health, and he has frequent appointments with doctors and speech and physical therapists to track his progress.

“Campbell has 13 doctors at Phoenix Children’s Hospital following him,” Carrie Faulkner, Campbell’s mom, said during an interview. “We try to plan his schedule a week in advance.”

As organized as the family — Carrie, dad Shane, brothers Clayton and Carsten and sister Sage — tried to be, the stress of juggling classes and homework from attending  a brick-and-mortar school got to be too much for Campbell, he said during an interview. During the last school year Campbell missed nearly 100 days of school due to illness and doctor appointments.

This added to his mom and dad’s near-constant worry as to whether Campbell was getting proper nutrition at school and whether he was adequately supported in order to be successful in the classroom.

His parents decided that Campbell and their family needed a change. They enrolled Campbell at Arizona Virtual Academy, a tuition-free, public online school for Arizona students. At AZVA, Campbell is able to complete his schoolwork on his own schedule and is no longer forced to miss classes due to doctor visits or illness, Mrs. Faulkner said.

And the change seems to be doing Campbell good. The progress has been slow and steady since he enrolled in January. Campbell has started to gain weight and he is excelling in his schoolwork.

“Campbell is healthier at home. There is no strict schedule. If Campbell is hungry, he can eat during classes,” Mrs. Faulkner said.

“There are placement tests for each level and the curriculum will adjust to Campbell’s aptitude,” Mr. Faulkner said during an interview. “He can accelerate in one subject and slow down in another.”

Campbell said he does miss his old school friends but his social calendar is full. For one, he is becoming an accomplished motivational speaker. On Feb. 27, he donned a fedora and mini-Zoot suit to address the more than 200 attendees at a fundraiser for the Translational Genomics Research Institute (TGen) Center for Rare Childhood Disorders.

“TGen brings lots of hope to my family and me,” he told the attendees dressed in 1920’s-era attire. “When TGen said they wanted to test my blood, it was the same day I asked Santa Claus for a cure.”

On June 6, he spoke at the 6th Annual Blue Agave Charity Golf Tournament to benefit HopeKids Arizona, which grants special wishes to children facing life-threatening illness in Arizona.

The Faulkners participate in many activities sponsored by HopeKids and the Miracle League of Arizona. The latter organization offers a safe and successful baseball experience for children, teens and adults with disabilities or special health care needs.

Through these organizations, the family has been able to spread the word about Campbell’s Crew. Mrs. Faulkner gave her family the moniker when they united to assist Campbell with his medical treatments, schooling and other day-to-day activities. They even created green wristbands to wear, green being the color associated with mitochondrial disease awareness, Mrs. Falkner said.

But, like Campbell himself, the crew reached out and enveloped many other well-wishers.

A number of athletes, many of whom the Faulkners have met at Miracle League events, now sport a Campbell’s Crew wristband. Chicago Cubs left fielder Kyle Schwarber hit a home run wearing one.

Olympic kayaker Mike Dawson will represent New Zealand at the 2016 Olympic games in Brazil wearing his Campbell’s Crew green wristband. He is seen wearing it in the photo above that he sent to the Faulkners with the inscription: “To Campbell’s Crew, Thanks for supporting my journey to Rio 2016. I’ll be racing for you guys. Mike Dawson.” (Special to the Independent/Carrie Faulkner)

And Olympic kayaker Mike Dawson will represent New Zealand at the 2016 Olympic games in Brazil wearing his Campbell’s Crew wristband. He is seen wearing it in a photo that he sent this month to the Faulkners with the inscription: “To Campbell’s Crew, Thanks for supporting my journey to Rio 2016. I’ll be racing for you guys. Mike Dawson.”

While the future may be uncertain for Campbell, for now, he is focused on enjoying the things he loves: playing baseball for the Miracle League, throwing out the first pitch at a Chicago Cubs’ spring training game and educating people about his disease while inspiring them along the way.

Campbell is chronicling his journey on his Facebook page.

As of June 24, he had 634 Likes from people who are learning that mitochondrial disease or other maladies do not necessarily stop one from living life to the fullest.

Just ask Campbell Faulkner. He’s happy to share his story.

News Editor Wendy Miller can be contacted at 480-982-7799 and via e-mail at qcnews@newszap.com, or follow her on Twitter @WendyNewszap123.

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