Editor’s Note: Camden Fortner, 11, of Winder, died June 14 as the result of complications from Pearson syndrome, an extremely rare mitochondrial disease that carries a short life expectancy. There are fewer than 100 cases reported worldwide. Below, Fortner’s mother, Erin Matthews Clark, provided this tribute to her son to The Barrow News-Journal.
A visitation for family and friends will be held from 2-4 p.m. and 6-8 p.m. Saturday, June 26, at Smith Funeral Home, 755 Atlanta Hwy. SE, Winder. A community celebration of life service will be held at 2 p.m. July 17 at Bethlehem Church, 548 Christmas Ave., Bethlehem.
A full obituary for Fortner can be found on page 3B of this week’s edition of The Barrow News-Journal and online at barrownewsjournal.com.
Camden loved to vacuum.
He would pour dog food on the floor just so he could vacuum it up. He loved going down the vacuum cleaner aisle at Walmart. He would point at them and insist we test drive the latest models. Not the toy vacuums; real vacuum cleaners, the kind with reliable suction.
When he wasn’t able to walk anymore, he would crawl on the floor, following me with the cord to the vacuum cleaner. Wherever he went, if he saw a vacuum cleaner, he’d get to it and unravel the cord so he could vacuum. At school, at his sister’s gymnastics gym, at the hospital, the boy could sniff out a vacuum cleaner in need of his wielding, anywhere.
In school, Camden loved to help his teachers. He insisted that he would distribute the napkins; only he would divide the cake among his friends. He liked to help the lunch ladies put the little milk cartons in the cooler.
And everywhere he went, he had friends. At lunch, he’d stop and hug a friend who wasn’t in his class. He loved riding the little bikes in the gym with his friends, or with Coach. He had a hard time sharing his teacher, Jenny, with his friends; he loved her so much and wanted to be the center of her attention and love constantly. He had a special bond with his other teacher, Daryll, who knew that Camden could keep his secret, the planned name of his yet-born daughter, until it was time to tell others.
And nobody at school would begrudge Camden a pajama day all on his own; he didn’t need a special occasion. He hated zippers, and buttons, and strings; anyway, he had more pajamas than he had regular clothes. His teachers loved seeing him in his pajamas; the doctors and nurses, too. They lamented not wearing pajamas every day, but they never begrudged Camden his pajamas.
Camden loved music. He had several favorite songs over the years. “Wobble” was on repeat there for a while. He would say “wobble baby-wobble baby,” over and over again, dancing. He was on a Taylor Swift kick for quite some time; he longed to meet her, so much so that she was at the top of his Make-A-Wish list. We would listen to her “Bad Blood” constantly, on our karaoke machine and a well-loved microphone.
When he was younger, Cam loved going to the doctors. We had our routines, including a standing order at the vending machine: Cheddar and Sour Cream Ruffles and a Coke. He hated having his blood pressure checked, but he didn’t mind having his blood drawn. A couple times he even pointed at his arm to show the tech where to put the needle. Around age 9, his preferences changed, sharply.
When Camden wasn’t able to walk as well, he started loving baths more. He would ask to draw a bath several times a day. He liked having the drain open with the water running. He liked lying down and having the water come up over his ears. He loved it when I would wash his hair and rinse the water over his head while he was laying down, a “hair massage” we called it. He would stay in the bath for hours if I let him. One time he closed the drain and just let the water run until it flooded the bathroom floor with at least an inch of water. While it killed our water bill, his happiness was always worth every penny.
Camden loved amusing his siblings. He would say the funniest things to make them laugh and get a reaction. He absolutely loved getting his feet rubbed. Sometimes his sisters, Kayla and Emily, would give him a foot rub and “hair massage” at the same time; Heaven! He didn’t like sharing me with them, though. The girls would sit in my lap, and Cam would try to push them away, saying “my mommy.” We’d ask him who his favorite was out of his three siblings — Kayla, Emily and Ethan or his dogs, Bella and Saka — and his answer would change depending on who was giving him the most attention or whatever he wanted at the time. Camden loved his dog Bella, who willingly cuddled with him; Saka wasn’t much of a cuddler, but loved to do tricks for Camden’s handful of treats!
Camden was born with an ultra-rare mitochondrial disease, called Pearson syndrome; there are fewer than 100 cases reported worldwide. Most children pass before the age of 3, Camden lived to be 11. If children survive past 3, the disease progresses into either Kearns-Sayre syndrome, Leigh syndrome, or both. Camden’s disease progressed into both.
Some of the specialists he had included a neurologist, cardiologist, hepatologist, hematologist, nephrologist, endocrinologist, gastroenterologist, geneticist, mitochondrial specialist, opthamologist, palliative care team, and an ENT. He saw specialists at Emory, Children’s Healthcare of Atlanta and the Cleveland Clinic. Some medical issues he had included liver disease, diabetes, kidney disease, some hearing loss, some vision loss, frequent vomiting, failure to thrive (grow), gastrointestinal dysmotility and sleep apnea. He lost his ability to talk and walk; he couldn’t swallow his food and drinks without choking. He had a GJ feeding tube, a pacemaker, a wheelchair, hearing aids, glasses, a speech-assisting device and ankle supports. Throughout his life he required approximately 20 different medications. He had speech therapy, occupational therapy, physical therapy, and he was about to start aquatic therapy. He had several medical procedures, surgeries, and hospitalizations.
Camden’s nickname, “SuperCam,'' became popular among the doctors and hospital staff when I added it to his medical chart in a mobile medical records app. Seeing how tough Cam was, it’s no surprise that the moniker suited him among his scores of medical profession friends!
In August of 2019, Camden was in the first ever FDA-approved clinical trial to help find a cure or better treatment for Pearson syndrome. He received mitochondrial augmentation therapy (MAT), and months later, he started showing significant improvements. He was able to speak a few words clearly. He took his clothes off and climbed in the bathtub unassisted. He stood and took five steps, unassisted. It was incredible! Seeing how well this treatment affected him gave me so much hope for his future. This treatment is one that needs to be repeated. Clinical trials take a long time to prove they work and are safe.
Sadly, Camden’s disease progressed rapidly this May. He had a metabolic stroke. A metabolic stroke is the rapid onset of lasting central neurological deficit associated with decompensation of an underlying metabolic disorder. His doctors stated the parts of his brain that were affected control arousal and movement. They stated that he wouldn’t be able to wake up and stay awake. They stated that he wouldn’t be able to move voluntarily. I wanted so badly not to believe them. I hoped he would be able to recover, like other mitochondrial patients have done with metabolic strokes. Camden was discharged from the hospital after his metabolic stroke. Once we were home, I started learning how to take care of his new and more severe medical needs.
As the days went by, I started noticing Camden’s breathing was changing. On June 6, I took him to CHOA urgent care. He was much worse than I thought he was. They wanted to life-flight him to Egleston, but the helicopter wasn’t running due to bad weather. They called for the CHOA ambulance and stated that they might need to call 911 if the ambulance couldn’t get there fast enough. The CHOA ambulance made it in time, ran additional tests, and intubated (put a breathing tube in) him prior to leaving for Egleston. They said he was bypassing the emergency room and going straight to the pediatric intensive care unit. The urgent care was his emergency room, which isn’t typical.
After a few days, it was clear to the doctors that his disease had progressed even further. I had a gut feeling prior to taking him to urgent care that it wouldn’t be something they could fix. I was hopeful that they would find something that was fixable, but deep down, I knew it wasn’t and that his time was coming soon. He fought so hard for so many years, but this disease had taken over and he was so tired of fighting. Over the next few days, it was time for the family to visit and say their goodbyes. We made molds of his tiny hands and feet. They show the tiniest of details, and I love them so much. We made family handprints on a canvas. We made a family tree with everyone’s thumb prints. I also had to prepare myself, as well as I could, to remove life support and hold him while he passed.
Death has always terrified me. I somehow managed to go from being terrified to hold him while he passed to not wanting to miss it. He needed me to hold him and cuddle him. He needed to lay his little head on my chest. He needed me to cuddle and comfort him. We both needed that so much. I wasn’t able to cuddle with him because he was intubated. I started to worry that he might pass before they removed life support. On June 14 at 1:11 p.m., in Egleston’s PICU room 4111, I held Camden as he took his last breath. He is no longer in pain. He is free from this terrible disease. He’s in Heaven and finally at peace.
Camden's battle with Pearson Syndrome may have come to an end, but my fight continues in the form of advocacy for children like Camden. I will continue my commitment to The Champ Foundation, a non-profit organization co-founded by parents of children with Pearson Syndrome. It is our mission to find a cure and better treatments for Pearson Syndrome and other single large-scale mitochondrial deletion syndromes (SLSMDs). I support this cause in honor of my sweet SuperCam.