Every once in a while you do a story that’s a game changer. The story of CJ Soeby was one of those. It actually changed the way medicine is practiced in this country – which continues to help many other boys and girls afflicted like he was every day.
CJ had a brain tumor. Not the cancerous kind – but one that was emitting electrical charges and causing epileptic seizures. He’d been seizing 24/7 since he was born.
His parents had tried everything. Medicines for epilepsy didn’t work and seemed to be hampering his development. Surgeons at several big neurological centers in the U.S. said they couldn’t remove the tumor in its entirety. The child’s prognosis was awful: the seizures were expected to increase in severity, leading to brain damage and decline in brain function. The Soebys were warned their son would likely be rendered so mentally incapacitated he’d never lead a normal life.
In their search for answers, the couple went online. (This is another reason I love sharing this – it’s really a story of our time. Because if you’ve got a child with a rare condition, you might not find anyone who lives near you who also has it. But you can find 15 families in 15 countries around the world in a nanosecond on the internet. Which they did.)
Turns out an international group comprised of parents whose children all had this same condition had coalesced and were searching for better treatments together. They’d identified a pair of doctors in, of all places, Australia, who were doing a highly experimental kind of brain surgery which seemed to work. It was hugely risky – but the upside was just as big: the doctors were able to take these brain tumors out and the children were emerging seizure free. Every time a child went under the knife, parents around the globe shared the experience online and in emails, moment by moment, with the rest of the group.
The Soebys asked their own doctors to consider this surgery – but were turned down. So they took CJ to Australia. And we (the team from Dateline) went with them. To make a long, amazing story short: the operation was successful. They removed CJ’s tumor. And he stopped seizing.
And here’s where it gets even more interesting. When the Soebys shared their story on national TV, his doctors in America were persuaded to take another look. They actually invited the Aussie docs here to teach them the surgery. Today, this operation is part of the standard of care in America for children with this rare condition. CJ has grown up so much now I probably wouldn’t recognize him — and I know he’d barely remember me. But it touches me even now. Every time his mom spoke during our interview — about feeling both helpless and driven to “do something” — I felt my heart clutch. I will always admire the Soebys — who just wouldn’t be told that nothing could be done. Who would literally span the globe for help. And who would end up helping so many more beside their son.
This story was produced by the awesomely talented John Block — my colleague and my true-and-forever friend. He found the Soebys in Phoenix. I had the incredible privelege and pleasure of being invited along for the ride. Know how I said the story was a game changer? It changed me, too — for which I’ll always be grateful to John.