A Matter of Life & Death

It’s the not knowing that makes life so difficult for Ramsey Farley’s parents

Ramsey and his mother, Tami Gardner, left, and his stepmom Jamie Farley.

Ramsey and his mother, Tami Gardner, left, and his stepmom Jamie Farley.

Photos by Megan Berner

Ramsey Jackson Farley just turned 7 on June 16. He may not live to 8. Or he may make it much longer. That’s a fact his parents accept. He’s going to die. We’re all going to die, but most of us had some kind of chance to live before we died. In many ways, Ramsey was denied that.

Nobody knows exactly when or how Ramsey will die. Not his parents, not the hundreds of doctors and nurses he’s seen. He’s got a disease that has no diagnosis, has apparently never been described in the medical literature. It’s that ignorance that makes every moment bittersweet. Not to be maudlin, but it’s a bittersweetness we should all probably experience with our loved ones. Life is short, and the difference between 8 years and 80 years in comparison to eternity is the wingbeat of a gnat. Nobody dies healthy.

“This is what scares me,” says his mom, Tami Gardner. “The worse thing about it is he’s sits there with drool in his mouth. We don’t know if it’s going down the wrong tube [into his lungs]. He doesn’t feel it. He could literally die in front of us, he could drown, and we wouldn’t even know it. … Why would you send a child away who could drown on his own spit? Why wouldn’t you keep him there, put him in the hospital, put a monitor on him? Why would you just send him away?”

Look in Ramsey’s eyes as he sits in his black, high-tech wheelchair, and you can sense a mind behind them, but it’s unclear how much thought happens. Neither Gardner nor Art Farley, his dad, nor Jamie Farley, his stepmom, can say with certainty how much Ramsey’s mind has developed. The most terrifying possibility is that he has a high level of thought—he just can’t express it. It is clear, though, that there’s a certain amount of recognition of people and things.

Ramsey’s dog, Lucy, sits on his lap.

He wails, for example, when a cough-assist device is brought out—just the sight is distressing because of the pain it causes. No wonder—three times a day for 20 minutes at a time, the device is placed over his face and around his chest. It shakes him and forces air in and out of his lungs to loosen the phlegm trapped inside.

He smiles and laughs when the dog on his lap, Lucy, acts silly or when one of his moms holds his hand. There’s a constant stream of babble from him—punctuated by phlegmy coughs—like a baby but with the volume of a 7-year-old; no words, though. His disease causes him to slump. It has caused scoliosis, which eventually will require surgery to correct—but when he’s told to sit up, he does. Not being able to walk has caused his atrophied but stronger leg muscles to tighten to the point they pulled his hips out the sockets, requiring surgery.

From an outsider’s point of view—if you can ignore his size and accoutrement—he feels like a sweet-natured toddler. Maybe his stunted mind is a gift of nature because the pain caused by his treatments, surgeries and examinations is constant. Someone with a fully functioning mind could not remain sweet-natured. He goes to Donner Springs with other kids—not Marvin Picollo, which is considered the special needs school, he’s too high functioning for that—but he doesn’t get frustrated when he’s left watching alone at recess. He’s also got a busy schedule of therapies—occupational, physical, speech, special ed—that’s another drain on him and on all his parents.

But the pain caused by his disease is all the more poignant because all his parents feel it acutely. The psychic pain also has its foundations in ignorance. Nobody knows how the end will come. His disease’s most obvious symptoms are muscle-based. Essentially, some of his muscles have not developed since he was an infant. An infant’s muscles are not enough to move a 7-year-old boy around.

But then he’s got some muscles that have developed a bit. That’s one thing that confuses doctors: the high muscle tone mixed with low muscle tone.

“One of the things that makes me most brokenhearted and frustrated is that for the better part of a decade, politicians argued about stem cell research, and whether cells from the unborn could be used in research,” said Ramsey’s father, Art Farley. “The entire human genome could have been mapped out. The reason they can’t diagnose him is because they can’t test for things they don’t know about. My kid is not the only kid that’s suffering because of that. At least, we could have known.”

The heart that moves blood through the body’s circulatory system is a muscle. The diaphragm that pulls air into the lungs is a muscle so he has constant bouts with lung disease. It takes muscles to swallow or to move food through the system so now he has a tube to put food in, and eventually he may have a colostomy bag to move the remainder out. Maybe his heart, strong enough for an infant but certainly not for a 7-year-old, will finally expire. Some would call that a blessing.

“When he was younger, when he was 2 or 3, it was, ‘Well, he’ll just be in a wheelchair,’” Jamie says. “But now, there are so many health problems that are starting to crop up, that are completely unforeseen. We have no idea where we’re going. It’s uncharted territory. Tami and I are so tired of going to a different doctor and answering the same questions. And then basically to have nothing.”

But, again, even though he’s been seen by specialists at the best hospitals in the West—UCLA, Stanford, UCSF, Shriners, Davis—and he’s had his case studied halfway around the world, his mothers’ pain can’t be eased because nobody, nobody they’ve seen anyway, none of the experts, can tell them anything.

“I feel like we’re living in this bubble and every time we go somewhere new, I feel like there’s going to be an ER episode—” says Jamie.

“—or House,” says Gardner, continuing Jamie’s thought, as happens frequently in the course of conversations with the two moms.

“Yeah, where’s our ‘House?’” Jamie says. “This sounds really dumb, but why has no one ever seen anyone like him before? We’ve probably seen 70 or 80 doctors, and that doesn’t even include the nurses. And no one has ever seen anyone like him. It’s so frustrating.”

“It’s one thing to throw your hands up, but give us another avenue, another specialist or something. But it’s like ‘Oh, we don’t know.’”

Hope springs eternal, though. And Ramsey’s mothers believe that someone, someone they haven’t seen anyway, one of the experts, can answer their questions. They’ve sent many letters to national media stars, like Oprah Winfrey or Ellen Degeneres, who did not respond. And now they’re turning to their neighbors, folks here in the Truckee Meadows, for a little help.

What they’d like to ask you—and why they’re publicly exposing their private pain—is if you personally know any medical practitioners in your Facebook friends list, email contacts list, Twitter feed—here or abroad—send them a link to this story and ask them to forward it to anyone they know. They’ve set up an email account, support4ramsey@hotmail.com, and Facebook accounts, www.facebook.com/ramsey.farley and www.facebook.com/pages/Support-and-Help-for-Ramsey, for people who have knowledge, any information at all, to connect.

Because as special as he is, Ramsey can’t be the only one. Someone on God’s green Earth knows something. Someone has seen this before. Someone knows how their own child or patient died, how long that child lasted.

There’s no rational reason to hope for a cure. All the family wants is information, so they know how to prepare, so they know how to make Ramsey as comfortable as possible. Because not knowing anything is just too cruel.