Family travels nearly 4,300 miles to Jacksonville for cancer treatment

JACKSONVILLE, Fla. — A 20-month-old boy traveled from England to Jacksonville to receive help in fighting a rare type of cancer.

“As a parent you're obviously petrified and it's the worst thing you can be told about your child, that they've got cancer,” said Gemma Edgar, the mother of 20-month-old Noah.

Jacksonville has become a hub for medical tourism.

Noah, who is in the fight of his life, receives treatment at the largest proton therapy program for pediatric patients in the world.

“It all sort of happened really, really quickly,” Gemma Edgar said.

Just before Christmas, Noah’s parents noticed redness in his right eye.

“It eventually was completely swollen, and swollen shut,” Rob Edgar, Noah’s father, said.

Doctors initially thought it was just an infection, but then they found a tumor.

“Unfortunately, they said it was the highest grade,” Gemma Edgar said. “Luckily, it hadn't spread outside of the eye. But it had detached his retina and he was already blind in that eye, so we were told then that he'd have to have the eye removed.”

Noah has retinoblastoma, which is so rare it only accounts for 3 percent of all childhood cancers.

“Mid-March we were told actually he needs radiation and the best way to do that is proton therapy, which isn't available in the U.K. We were told we'd be coming out to America a couple of months to have the proton therapy,” Gemma Edgar said.

At the UF Health Proton Therapy Institute, doctors are able to precisely target cancer cells with a powerful beam, minimizing damage to healthy cells.

“Our motto is never, ‘lose hope,’” Gemma Edgar said.

Noah’s mother is also fighting for her life.

“When he was 8 weeks old, I woke up with just the worst headache,” Gemma Edgar said.

Tests revealed an incurable brain tumor.

“I'm just on watch and wait,” she said.

“They say lightning doesn't strike twice, but it obviously does,” Rob Edgar said.

But despite it all, you’ll never see the Edgar family down.

“It's hard, but we both have a very positive outlook on it and think that's the best thing to be positive,” Rob Edgar said.

“If you're happy and positive then so are the rest of us, hey? Yeah,” said Gemma Edgar said.

It's become tradition that when a patient has their last treatment, they ring a chime. Noah will ring it on May 24.

When caught early enough, most children survive retinoblastoma treatment. Noah’s doctor said his prognosis is good.

Noah's family is dedicated to fundraising for several cancer research funds. If you wish to contribute, visit the Children Eye Cancer Trust website.

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