|ESPN.com: My Wish||[Print without images]|
As the Byrd family piled into the reception lobby at Chase Field before a Diamondbacks game in April, the stares of strangers fixed on the two children in wheelchairs. No one said anything; that would have been rude. But the sight of 5-year-old twins Lauren and Kyle -- smiling, chatting up the adults around them, showing off their fan gear -- likely stirred various emotions in the onlookers: curiosity, sympathy, pity, admiration and maybe even wonder at the double misfortune, gratitude that it was not their children.
|Kyle Byrd and his family, including his twin sister, Lauren, visited the Arizona Diamondbacks at Chase Field before a game in April.|
But what caught my eye, what caused me to wince a little, was the machine that the twins' grandmother was carrying. I knew right away what it was. It's called a cough assist. The Byrd's model was a smaller, sleeker and digital version of the bulky device we had for our son, Wyatt, but the purpose was the same: to help a child breathe because he's too weak to clear his own throat. Staring at it, I flashed back to the last time we used ours, frantically pushing the mask against Wyatt's face, watching his oxygen level dip to zero, feeling him go slack in our arms.
When I saw the Byrds, especially Kyle with his Diamondbacks jersey, miniature bat and kid-sized glove that his hand is too weak to hold -- I felt anger. The unfairness of this disease, known as spinal muscular atrophy -- to be on the wrong side of 6,400-to-1 odds -- is bad enough. But to have it happen twice to the same family. How can the odds be so cruel?
'That was like magic!'
Kyle and Lauren understand they can't do things right now that other kids can, but there's the sweet -- and even sad -- naiveté of a 5-year-old that gives them hope that any day now they'll be able to run the bases or ride a bike.
And on this day, Kyle believed he was going to play baseball. Real baseball. That was the wish he was told he'd be granted with the Arizona Diamondbacks -- to be made a real member of the team for a day.
Second baseman Aaron Hill and first baseman Paul Goldschmidt, whose impressive slugging this season has him in contention for the National League Most Valuable Player award, were waiting for him at a kid-sized batting cage and baseball diamond on the concourse of Phoenix's Chase Field. Wielding his pint-sized bat, Kyle swung toward the whiffle ball, hitting more often than missing Hill's pitches. Then Kyle got a solid hit. "All right, there it is, go, go, go!" Hill said, as Kyle started to cruise the bases in his motorized wheelchair.
"You hear the home run call? You hear it," said Hill, as the team's signature home run siren blared over the loudspeaker.
"How did that happen?" said Kyle, with a look of awe on his face. "How did that happen? That was like magic!"
Later, after a tour of the clubhouse and a series of pictures with the team on the field before batting practice, came that difficult moment when Kyle's mom and dad told him they had to leave the field.
"No, I want to play," he said, and he frowned in anger, wheeling his power chair around as he lowered his head and tucked in his chin like a turtle receding into its shell.
Bound by a disease
I wanted this assignment for ESPN's My Wish series, a partnership with Make-A-Wish, because the Byrds and I are bound by this disease, which I knew nothing about in July 2010 when our son, Wyatt, was born. I had never even heard of spinal muscular atrophy. When you lose a child, you try to find some meaning, some answer to the "Why us?" questions that persist. And I had vowed to do what I could to make more people aware of SMA, a devastating genetic disease for which there is no treatment and no cure. If more women of child-bearing age and their partners knew about SMA carrier screening, there are steps they could take to avoid having a child with the disease. More attention could also bring more money to SMA organizations that help fund research to cure SMA and support the families already struggling with the disease.
|Kyle's name appeared in the starting lineup.|
Wyatt was just 5 months old when he died. We held him, read his favorite books, snuggled him with his teddy bear as he took his last breaths on Dec. 12, 2010. The day Wyatt died was devastating. It was just a couple weeks before Christmas; we passed homes decorated with lights on our ride to the funeral home, while I held Wyatt in my arms. I was envious of those families and the holiday celebrations they would have while we were planning our son's funeral.
Wyatt had SMA Type I, a death sentence for most babies. SMA is a degenerative neuromuscular disease, which means muscles, including those used to eat and breathe, weaken until they can't function anymore. It's caused by a defect -- actually a missing part -- in the Survival Motor Neuron 1 gene. The defect reduces levels of a protein needed to sustain cells in a certain part of the spinal cord. It's an autosomal recessive disease, which means that both parents must be carriers of the defect in order to pass it on to their child. With each pregnancy, there is a 1-in-4 chance the child will have SMA.
Children with Type I SMA are usually diagnosed before they're 6 months old. Wyatt's progression was typical. He could never hold his head up on his own, much less sit up, crawl or roll over. He could move his arms, mostly his forearms and hands, and that was about it. He quickly lost his ability to swallow, needing a feeding tube in his stomach shortly after he was finally diagnosed at 3½ months after testing for a myriad of other diseases. When he was a month old, doctors thought his irregular breathing was a respiratory virus. A few weeks later, when we noticed that one of his hands was limp and he couldn't hold his head up, he was tested for cerebral palsy. Weeks passed, more tests, and eventually, after our pediatrician consulted with a geneticist, an SMA test was ordered.
We were in our doctor's office, where we had brought Wyatt to get checked out for a possible cold. When I made the appointment earlier that morning, the office had called my husband to ask him to join us. As foreboding as that request was, we didn't expect SMA, because we had been told it would take a few weeks to get the test results. Only 10 days had passed, so we thought it was something else. I was trying to get Wyatt's clothes back on as our pediatrician said he had some bad news, that Wyatt had tested positive for SMA, and we all started crying. I was shaking so much I couldn't even button Wyatt's onesie, and our nanny stepped in to take over. That's the moment it all came crashing down. All the dreams, plans, hopes, everything.
When I was pregnant, I had a funny litmus test for choosing a name. It couldn't be too stuffy for a baby. It couldn't be something kids could distort into a tease on the playground. It had to sound professional on a business card, proud being announced in an auditorium during graduation, and powerful when mentioned on "SportsCenter." Those were the big dreams I had for our son, but what was most important for me was to have a child who would enjoy baking cookies, hiking in the woods and making crayon drawings for our fridge.
The Byrds had dreams of their own for Kyle and Lauren. Chris and Cassandra met in an AOL chat room in the late 1990s. They married in 2002 and had a little girl, Jenna, who was 3 when the twins were born in the summer of 2007. When Cassandra was pregnant, and the ultrasound tech casually asked if twins ran in their families, Chris rocketed back in the rolling office chair and Cassandra says she recalls uttering something probably unfit to print. They hadn't known there were two, but they were happy with the news.
|Kyle and his twin sister, Lauren, seen here in the summer of 2009, were more than a year old when they were diagnosed with SMA Type II.|
The day Chris Byrd found out he was having a son, his mind took off with infinite possibilities. Sports were always big in the Byrd household. Chris asked Cassandra to marry him via a message broadcast on the video board at what is now Chase Field. He had played football and volleyball at Mississippi State and avidly follows professional soccer.
"I figured, he's my son. He's going to sign a football contract with the Chelsea football club by the time he's 16," Chris says. He even humorously envisioned being the boy's agent and one day moving to London, all the while vowing not to really push Kyle into any sport he didn't choose on his own.
But those scenarios all changed with the diagnosis.
"That dream, it went out the door and it went out the door pretty fast. He's never going to ride a bike. He's never going to be able to sit on the toilet on his own."
Chris and Cassandra Byrd, like many other SMA parents, also went through several months of mystery in trying to figure out what was wrong with Kyle and Lauren.
Though there were vague hints of trouble early on (in retrospect, Chris says the children were never fond of "tummy time," the practice of putting weeks-old babies on their stomachs to encourage them to develop neck muscles; he remembers them lying with their heads down in snot and tears), the first real warning sign came the day after Christmas in 2007 when the twins were 6 months old and not even close to being able to sit up on their own, something that most children can do at that age. Chris and Cassandra were encouraged to be patient. They would be told the same in regard to pulling up to stand, with doctors and other parents constantly reminding them that all children develop at their own pace. Cassandra says her concern escalated when the children's grandfather noted that Kyle didn't seem to be able to support any weight on his feet when he held the boy on his lap and tried to help Kyle stand. But at the twins' 9-month checkup, their pediatrician told Chris and Cassandra to hang tight and see what happened when the twins turned 1.
|Kyle poses for a photo with his new Diamondbacks teammates.|
When that deadline rolled around, and they still weren't sitting up -- much less crawling -- everyone knew something was wrong, and so began a litany of possible diagnoses that led to tests, that led to waiting on results, that led to more dead ends. Doctors ruled out all sorts of maladies, including leukemia, before the Byrds finally were referred to a pediatric neurologist when the twins were 16 months old.
"The neurologist took two steps inside that room, and before he even shook our hands, he knew it was SMA," Cassandra says. Medical staff drew blood from both children, advised their parents of the wait for results, and a nurse sent them home with one directive: Stay off of Google.
As it turned out, Kyle and Lauren had SMA Type II, which is better -- in a relative sense -- than having the more common Type I. The nurse didn't want the Byrds to be scared by all the information they would see if they read about the worst-case scenario -- the Type I babies, like our Wyatt. Type II children have a better prognosis. Their lifespans vary widely, with some living only a few years and others making it as far as 40 or 50. The Byrds said they're hopeful that the twins will at least reach young adulthood. SMA doesn't affect the brain, so an SMA child's mental capacity is the same as a healthy child's, and scientific studies have shown that older children with SMA tend to be more intelligent than children without SMA.
As Type IIs, Kyle and Lauren can hold up their heads while sitting upright, can move with a range of upper-body motions and can breathe on their own. They do need special machines to help them clear their throats, and they wear a breathing mask hooked up to a type of ventilator overnight while they sleep. They can still eat regularly by mouth, but they get extra nutrition via a feeding tube in their stomachs. Orthotic braces keep their legs and feet aligned correctly.
These things are commonplace to the Byrds now. Four years ago, they had no idea what to expect when they first got the SMA diagnosis.
Although many mothers, me included, would hear that directive to stay off the Internet and then head straight to their computers, Cassandra said she didn't. She willed herself to avoid the Internet as she had during most of their struggle to get a diagnosis, and kept her mind busy with the day-to-day tasks of caring for two babies and a young daughter.
It was only at night, when Cassandra would go into each baby's room, gather each one in her lap to nurse and rock quietly, that she would let go, and cry quietly.
"I was just looking at this child and saying, 'I don't know what's in your future. I just know I have to help you get through this,'" she says.
The best life possible
The vast unknown is something all SMA parents struggle with, especially with a disease for which there really isn't any treatment and no hope their children will get better, save for some medical miracle. Pretty much all that can be done is to manage symptoms and wait for the next emergency. At first that was a huge roadblock for the Byrds; Chris says he wasn't sure whether they should be making plans for a funeral, or saving for college.
Because the more severe SMA Type I is more common, that's much of what the Byrds came across in those first few weeks of diagnosis -- and almost all they read and heard was scary. It was tough just to look at the pictures, images of babies with tracheostomy tubes coming out of their necks and toddlers lying supine on special reclining wheelchairs with frozen looks on their faces because they had lost the ability to smile.
But as Chris and Cassandra met other Type II families, they almost started seeing themselves as somewhat fortunate. Yes, their children were in wheelchairs, but at least they could use a wheelchair. At least they could blow bubbles and smile and laugh with their friends. Since SMA doesn't affect the brain, Kyle and Lauren can do all the things other kids do intellectually -- they read lots of books, play on their iPad and go to school. And they've developed the twin bond. The Diamondbacks experience was Kyle's wish, but it was almost impossible to separate him from his sister. Even in the middle of his favorite moment of the weekend -- playing in the kid-sized baseball diamond with two of his favorite players -- he asked if Lauren could have a turn hitting.
|Kyle Byrd and his sister, Lauren, swim with their mother, Cassandra, in a neighbor's pool in the summer of 2009.|
As the Byrds watched their twins grow into toddlers and then into kindergartners, with their inability to walk, their power chairs, the funny way their hands drooped and the other physical manifestations of their disease becoming apparent, Chris and Cassandra adapted to something familiar to any parent of a special-needs child -- something called "the new normal." The disease transformed from an earth-shattering, life-changing event to part of the Byrds' day-to-day routine: Tasks like loading the twins' power chairs into their adapted minivan, waking up several times a night to turn Kyle or Lauren in their beds or adjust their breathing masks, and changing their diapers became normal for Chris and Cassandra.
"You accept the cards you've been dealt. As their dad, I'm going to give them the best life possible and make them as comfortable as possible and get them to live as close to what society would deem a normal life as possible," says Chris, who coincidentally works in the field of medical research. "Any piece of equipment. Any surgical procedure. That's what my job is now. It's not to get them into the best soccer clinic."
When the disease is out of your hands, you control what you can. Although Wyatt's case was more dire and our time with him shorter, our mantra was the same as Chris': to give him the best life possible. Even though Wyatt was only an infant, we did what we could. He played with a penguin on a trip to the zoo. He "rode" a horse on his grandparents' ranch. He enjoyed a special visit with Santa a few days before he died. We made a conscious, and -- to some -- controversial decision not to use any invasive means to prolong Wyatt's life. We did not go to the hospital. We used few machines. When it became harder and harder to revive Wyatt and to keep him breathing, we knew it was time to let go.
The Byrds told me about the Type I children they've met -- including families with more than one Type I child -- and how seeing others' struggle has made them feel almost fortunate. I'm not sure how to take that, not knowing whether their situation is any better than mine. How can you judge better or worse in a disease like this? There are no guarantees.
The Byrds had a scare earlier this year when Lauren passed out in her power chair, stopped breathing and was unresponsive for two minutes because she couldn't clear the mucus caught in her throat. They hate to think what might have happened had they not been in the parking lot of an urgent care facility, where they had gone to get an infection on Lauren's lip checked out. In February 2009, when the twins were 20 months old, they were in the hospital for two weeks with a respiratory virus that lots of toddlers get, but one that is potentially fatal for an SMA child.
"They're pretty strong-appearing SMA kids, but that doesn't mean that one cold won't turn into pneumonia, won't put them in the pediatric intensive care unit and they'll die," Chris says. "I don't want to sound morbid, but that's what goes through your head as the parent of a kid with SMA."
Testing is vital
That uncertainly is part of why Kyle and Lauren got their Make-A-Wish requests fulfilled at a relatively young age. Lauren asked for and got a trip to Disney World. Kyle's choice was totally expected.
His room is a Diamondbacks shrine. Baseball bobbleheads jockey for space on his headboard alongside autographed baseballs. He has a wardrobe of Diamondbacks T-shirts. He learned the rules by watching games on television, listening to them on the radio and playing baseball on his Nintendo Wii. When the family went to the games, and Lauren and Jenna were begging for cotton candy or snow cones, Kyle's gaze would be fixed on the field.
There was irony in his father's realization: "It can easily be taken the wrong way when I say, 'He's the son I've always wanted.' But just from the sports, the fact that he gravitated toward sports, is really what I mean."
The tough part is knowing Kyle will never be able to participate fully in the sports he loves. It was evident in Kyle's frown and in his refusal to eat lunch with his family after he had to leave the stadium. The clubhouse locker with a Byrd No. 5 placard, his name on the roster, a special Byrd Diamondbacks jersey and even his own player bobblehead had made him smile, but Kyle's focus remained on the game itself.
|Kyle Byrd and his father, Chris, at Christmas in 2009.|
"He literally thought he was going to play today," says his dad. "He probably doesn't understand he's never going to play baseball. He's literally never going to be able to run the bases."
The questions are going to start any day now, and the sorrowful realization will soon follow.
"He's about to get to that age where he is going to start asking 'Why?' himself. And I don't have an answer for that," Chris says. "This is the one where I don't know if I'll really have the answers for that. I just don't know. I don't know why."
"He knows he can't hit a home run because his arms are too weak -- but he thinks maybe if he practices," Cassandra says. "So I think there's some hopefulness there. It's a delicate balance to keep him realistic but still nurture the what-ifs, the fantasy."
Even though the Byrds are optimistic for a cure -- and there is promising research -- they know it will likely come too late for Kyle and Lauren.
"They've declined so much physically that if a magic cure came tomorrow, it wouldn't fix all the physical problems. You can't fix scoliosis, the muscle contractions, the weak lungs," Cassandra says. "It would be good to have a cure because there are so many kids who have SMA who don't even make it as long as my kids have, and it's a devastating disease."
As I watched Kyle -- with his goofy grin and crazy dark brown hair -- swing his little bat in the lobby, waiting for his favorite player, Adam Eaton, to escort him to the field to throw out the first pitch, I asked him if he was ready.
"Yeah, I've got to practice," he said, and then showed me how high he could raise his arms -- using all his strength to elevate them, bent at the elbow, less than six inches.
Eaton greeted him and knelt down to talk to him face-to-face, not hovering overhead like a lot of adults typically do. "Are you ready for your debut here?" he asked. As they walked into the stadium and entered the concourse, Eaton held his left hand on Kyle's wheelchair, holding his glove in his right, all the way through the winding hallways and onto the field as the two bantered with ease. They parted near the first-base side, where Kyle in his wheelchair had to be raised to the field on a hand-crank lift. After some more pictures -- and a surprise visit by former Diamondback Ryan Wheeler, a particular favorite of Kyle's who had recently been traded to that night's opponent, the Colorado Rockies -- Kyle was escorted to the mound.
He sat there, surrounded by Eaton and Diamondbacks infielder Willie Bloomquist and two camera crews, when the announcer broke in: "And now, throwing out the ceremonial first pitch, Arizona Diamondback No. 5, Kyle Byrd." Kyle gingerly balanced the ball in his left hand, raised his forearm and threw with all his might. The ball landed just a few feet in front of his wheelchair.
As a loud cheer rose from the stands, I looked up at the crowd. To the fans this was probably just another nice thing: How sweet that that little boy got to throw out the first pitch. I wanted to shake them, to make them realize that probably one in every 40 of them sitting out there carried this defective gene that could put their future children at risk.
I want them to get tested. I want them to know what SMA is. I want them to donate money to find a cure.
I want them to know what just one day of life is like for Chris and Cassandra. I want them to see the Byrds changing diapers for twins who are now 6 years old, waking up several times a night to turn Kyle or adjust Lauren's breathing mask, or loading up the van with two wheelchairs and an assortment of machines for every outing. I want them to know Wyatt, the sweet little boy with blue eyes and blond hair and a sly smile, who loved sweet potatoes and books and glittery toys, but who never had a chance.
I want them to realize how fortunate they are.
I do now. Nine months after Wyatt died, I got my wish. I was pregnant again. Healthy twins. A boy and a girl, who are just starting to walk.