Barbie Herron was six weeks pregnant with her second child when her son Lyon, then aged four, was diagnosed with a tumor on his hip.
“I was a single mom. We had no money and no insurance. A doctor from my church removed the desmoid tumor and we assumed Lyon was cured. No one said the ‘cancer’ word, but we were told desmoid tumors were very rare,” said Barbie, who had Lyon when she was 17 years old.
Two years later, Lyon showed signs of colon cancer, which was misdiagnosed three times. One doctor said it was allergies. Barbie instinctively knew something was wrong and called UCLA’s gastroenterology department … from a pay phone. This was in the days before information was handily available on cell phones and the Internet.
The desperate but determined young mother described symptoms that included terrible pain and rectal bleeding. A colonoscopy revealed thousands of polyps. This, coupled with the desmoid tumors, convinced doctors that Lyon was suffering from Gardner syndrome, a rare and incurable disease caused by a genetic mutation.
Lyon’s colon and rectum were removed when he was seven, but he didn’t heal properly. Lyon’s doctor said it was just scar tissue. Mom knew differently and found the leading Gardner syndrome specialist in America (based in Cleveland), who discovered a massive tumor. Los Angeles doctors said they couldn’t remove it safely; the Cleveland surgeon was sure he could.
By then, the family had insurance, but the clinic was out of the network. The insurance company refused to pay for the operation and the clinic insisted on a deposit of $33,000. So began a series of fundraisers to help this extraordinarily resilient young man. That first event in 2007 raised $90,000.
Five hundred people attended this year’s fundraiser at Malibu West Beach Club, as well as dancing to The Roman Helmets band. The final figure raised isn’t in yet, but Barbie expects it to be around $50,000.
“We’ve had so much support from the Malibu community,” said Barbie.
The event featured silent and live auctions, as well as a raffle with prizes. Matt Coulter, Executive Director of The Young and Brave, a nonprofit founded to help young adults, children and their families beat cancer, was at the event, supporting Lyon and his cause.
Doctors in Germany gave Lyon stem cell therapy and completed a genetic sequencing that revealed Lyon’s body wasn’t receptive to any of the chemotherapy treatments he’d been having. Four rounds of chemo have been a waste of time and actually harmed his body.
“I don’t like to play the role of victim,” said Lyon. “I totally believe this disease is going to be cured one day. I feel I’m playing a leading part in the push to cure Gardner syndrome.
“People tell me I’m brave, but my mom has always made sure I never had to worry. So it was easy to endure the pain. My mom handles the stress of it. I so admire her strength.”
Lyon has no doubt he would not be alive today if it wasn’t for his mom and her titanic efforts to find him the best doctors in the world. “My mom is more knowledgeable about my medical problems than most of the doctors we’ve encountered in the last 20 years.”
This latest round of fundraising will get Lyon back to Cleveland for a sequencing test to find the most suitable chemotherapy program following the discovery of 12 new tumors, four of them life-threatening. The money will also help with daily living expenses since he’s too ill to get out of bed sometimes, especially during chemotherapy. Their goal is to return to Europe for gene therapy and to raise more awareness about Gardner syndrome.
Lyon feels guilty that his illness takes attention away from his siblings, Bella, 18, and eight-year-old Harper. Barbie has been raising three children mostly as a single working mother. Sometimes the struggle became too much. Sober for three years, Barbie said, “My faith in God is a constant source of comfort now. I know I’m here to hold Lyon’s hand and guide him through this journey. I’m going to fight for him as much as I can for as long as it takes.”
Lyon, too, has struggled with drugs and alcohol, and has been proudly sober for six months. “I went down a dark path and thought I was invincible,” he said. “My mom said I needed to stop. And I have.”
For more information or to donate, visit The Young and Brave.
