Feature

PHO T OS/ME G AN BERNER

AMATTER OF life & death

Ramsey’s dog, Lucy, sits on his lap. Ramsey and his mother, Tami Gardner, left, and his stepmom Jamie Farley.

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

by D. Brian Burghartbrianb@newsreview.com

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

“LIFE OR DEATH” continued on page 12

the hospital, put a monitor on him? Why would you just To Whom It May Concernsend him away?”

Look in Ramsey’s eyes as he sits in his black, high- This letter has landed in your hands in hopes that you or someone you know tech wheelchair, and you can sense a mind behind them, may be able to help us with our precious son, Ramsey Jackson Farley. Ramsey 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 has faced multiple challenges in the course of his 7 years. Ramsey was born on June 16, 2005, normal vaginal delivery. There were no complications during pregmind has developed. The most terrifying possibility is nancy or during the birthing process. When Ramsey was about 6 months, we that he has a high level of thought—he just can’t express noticed that he wasn’t making any attempts to roll over or crawl. It was brought it. It is clear, though, that there’s a certain amount of up to our pediatrician who suggested that all babies and children move at differrecognition of people and things. ent rates and not to be alarmed. But being parents, we instinctually knew that

He wails, for example, when a cough-assist device is something waswrong. At his year visit, the doctor acknowledged that something brought out—just the sight is distressing because of the was wrong: Ramsey was not able to crawl, or walk. 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 This set off the last five years of testing, doctors’ visits, surgeries, and genetic testing. We have been seen by four hospitals out of state: UCSF with of his lungs to loosen the phlegm trapped inside. Dr. Elliott Sheer, Stanford with the neurological department and genetics

He smiles and laughs when the dog on his lap, Lucy, department, Shriners with the orthopedic team and neuromuscular team, and acts silly or when one of his moms holds his finally UC Davis with Dr. Craig McDonald, neuromuscular hand. There’s a constant stream of babble from department. Out of countless doctors seeing Ramsey, he him—punctuated by phlegmy coughs—like a still has no diagnosis. The only things that they have ever 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 “We cannot be the only diagnosed are little to no muscle tone (hypotonia), and no reflexes. He seems to have an underlying neuromuscular disorder in which his muscles are not growing at the same 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 parents of a child like rate as his body. This affects his walking (unable), talking (very little, just mostly grunts and high-pitched squeals), feeding himself (currently unable), but it also is having hips out the sockets, requiring surgery. From an outsider’s point of view—if you can Ramsey.” more drastic effects. His stomach and intestines are muscles as well, so going to the bathroom has been impossibleignore 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 without the use of a ton of laxatives given daily, his muscles in his legs have become so tight that they pulled his hip treatments, surgeries and examinations is con- bones out of their sockets, necessitating double hip surstant. Someone with a fully functioning mind could not gery in December 2011. Also his core muscles are no longer able to support remain sweet-natured. He goes to Donner Springs with his trunk, giving him a 54-degree scoliosis. other kids—not Marvin Piccolo, which is considered the The most drastic and life-threatening effects though are in his lungs. The special needs school, he’s too high functioning for that—but muscle weakness in his lungs makes his cough useless, causing him to get pneumonia with the slightest cold or flu. The last hospital visit was 29 days PHOTO COURTESY TAMI GARDNER long, with over 10 procedures and surgeries. The most difficult part of this process is the absence of a diagnosis. What will that change, you might ask? We know that there probably isn’t a miracle cure out there for Ramsey, or if there is, it is probably too late to reverse the damage done to his body. But we as a family would like to have an answer to the most heart-wrenching questions: How long will he live? How will he die? Is he in pain? What is the average mental retention of a child like Ramsey? Also, we have no support system of people that know or have dealt with a child like Ramsey. It’s heartbreaking every single visit when they bring in a new doctor or nurse and we have to explain all of the surgeries and symptoms and complications, without being able to have a look of recognition in response. Our son is one of the nicest children, and I am not saying that because he is mine. His happiness is derived from holding hands, or touching others, or having his hair played with. He loves balls, penguins and his family. He is never unhappy, and he bears all of his hardships with a grace and magnanimous spirit that is heartbreaking and infectious at the same time. Everyone loves him: his teachers, his nurses, his numerous doctors, and his family. Please, if you know anyone that knows anyone that could help spread the word about Ramsey’s condition, it would mean the world to our family. We cannot be the only parents of a child like Ramsey. Thank you so much for letting us share our story.

“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.”

Thank you again,

Tami L. Gardner – Ramsey’s Mom. The following is a list of surgeries and procedures our little man has gone through.

Ramsey’s Procedures: • Several MRI over the years • Nerve Conduction Testing – 2 • Muscle Stimulant Testing • Ear tubes • Corrective eye surgery (for weakness in his eyes) • A surgery for a herniated belly button, muscle biopsy, and spinal tap • EEG • Double hip osciotomy surgery • Another muscle biopsy • G tube implantation • Bronchoscopes (3) • Full GI workup including lower and upper GI scans • Swallow testing (barium) • FEES swallow testing (3) • CT Scan • Numerous x-rays

And these doctors are currently seeing him: • Dr. Budhecia – pulmonologist • Dr. Riar – pediatrician • Dr. Gregory – gastroenterologist • Dr. Kip – cardiologist • Dr. Davids – orthopedic surgeon • Dr. McDonald – neuromuscular • Dr. Hulka – surgeon • Dr. Johnson – optometry • Multiple speech and physical therapists

This is a list of doctors he has seen: • Dr. Columbo – pediatrician • Dr. Rodriguez – neurologist • Dr. Kinman – pediatrician • Dr. Shirer – neurologist • Dr. Strober – neurologist • Dr. Manning – genetics • Dr. Wang – neurologist • Several orthopedics surgeons at Reno Orthopedic

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 7year-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.

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 a Facebook account,www.facebook.com/ramsey.farley, 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. Ω

All the family wants is information, so they know how to prepare.

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