Boy with rare tumor turns to Mexico for treatment option yet to be approved by FDA
When you look at six-year-old Andrew Lorie right now, you could never guess there's a time bomb ticking inside his brain stem.
"You want to run away and hide under a rock. You don't want to live anymore," said Andrew's mother, Lee Anne. "When it's your child, and there's nothing you can do, and they've told you there's no hope."
Lee Anne is talking about the moment in 2013 when Andrew was only two and a doctor diagnosed him with an extremely rare brain tumor inside his brain stem. It's called DIPG, and 99 percent of the time, the prognosis is imminent death.
Lee Anne said, "The first thing I said to my Mom is my son's going to die, and I'm never going to hear him say, 'I love you.'"
"You bring this child into the world ,and you are supposed to keep him safe and happy," said Andrew's father, Orlando. "I feel like I'm failing as a father."
Orlando is a Commander in the Navy Reserves and a commercial airline pilot. Though travel is a necessary part of his career, he never thought it would become necessary to give his son a chance of surviving.
Lee Anne explains, "We've chosen to take Andrew to Mexico, because the protocol they have allows the chemotherapy to be delivered directly to the site, which is his brain stem."
Lee Anne says, here in the United States, some doctors deliver the chemotherapy directly to the site but it is a much less intense combination of drugs and not as often. The treatment they can get in Mexico which Lee Anne says is helping other children is not FDA approved in America.
When first diagnosed, Andrew received the U.S. protocol of radiation and it shrunk the tumor, but then it began to grow again.
Orlando said, "Living in the greatest country in the world, we have to go to another country for an answer."
"There are now over 20 families from around the world down there," Lee Anne added.
She showed us pictures taken last week, when Andrew received his first round of the intense therapy at a hospital in Mexico. The treatment he's getting there does not come with a guarantee. It'll require monthly trips to Mexico, 13 rounds, costing nearly $300,000 out of pocket.
When asked about the return trip to Mexico, Andrew answers, "Mmmm....good. I can go souvenir shopping and find cheaper stuff."
Shopping for cheap souvenirs -- the way only an innocent young child could see this journey. We wish Andrew and his family the very best. To visit Andrew's Go Fund Me account page, click here.