Byrd uses relationship with the Diamondbacks to bring awareness to SMA
— --
IT WAS Star Wars night a couple of months ago at Chase Field in Phoenix, and Chris Byrd went a little overboard. He dressed his kids up in elaborate costumes and fashioned their wheelchairs into a sandcrawler and a command shuttle. The wheelchairs took about 20 hours to decorate, and the question drifting through Byrd's head as he fidgeted with plastic foam and duct tape -- Is it worth it? -- was answered shortly after they arrived at the ballpark.
"People just stop," Byrd says. "They stop and take pictures. The kids feel like absolute rock stars. And I'm not going to stop doing things that make these kids feel good. For a couple of hours, they forget.
"For a couple of hours, they're the ones who have an advantage over everybody else."
Though they don't get out to the ballpark as much as they'd like to, the Byrds are familiar faces with the Arizona Diamondbacks. Three years ago, Make-A-Wish granted Kyle Byrd his dream, to play for the Diamondbacks for a day. He received hitting lessons from Aaron Hill and Paul Goldschmidt, threw out the first pitch and was featured on ESPN's My Wish series.
Many of the once-familiar faces at the ballpark are gone now. Hill has bounced from Milwaukee to Boston, and Adam Eaton went to the Chicago White Sox. Some guys retired, some got hurt, and so Kyle scans the dugout for Goldschmidt, one of the last ones left.
In baseball, things change quickly. Unfortunately for the Byrds, life is full of constants: the feeding pumps at night, the loud whoops and sucking sounds of a cough-assist machine, and the uncertainty of a disease that, in its most severe form, kills the majority of children by the age of 2.
Kyle and his twin sister, Lauren, suffer from spinal muscular atrophy, a neuromuscular disease that compromises their ability to walk, eat and breathe. They have SMA Type 2, a less progressive form of the disease, but their life expectancy is unknown. Many children with Type 2 live to become teenagers and some even young adults, but the disease is very specific to each child.
There is a 1 in 50 chance a person is a carrier of SMA. If both parents are carriers -- meaning they each have a faulty gene -- there is a 25 percent chance that their child will have SMA. Chris and Cassandra Byrd are two-time victims of these long odds. They bathe and change their 9-year-old twins and hope they can live to see early adulthood.
"Both of these kids are freaking awesome," Chris says. "It's hard for me because it's like that butterfly effect. What if they could walk, but they weren't Kyle and Lauren? Kyle and Lauren are Kyle and Lauren, and I love the crap out of those two little kids. [If] this is the hand God dealt me, so be it. I got this, man. I got this."
AS PART of the 10-year anniversary of My Wish, ESPN recently sent update questionnaires to dozens of families who've been featured in the series. The Byrds' survey was brimming with optimism about playing chess and waiting for a cure. The twins will be fourth-graders at Norterra Canyon School this fall, and it has been a perfect fit. When they first enrolled, Chris was worried the twins would be picked on, but their classmates are compassionate and the parents are great. When a child gets sick, they generally are kept home, because parents know a common cold could lead to a trip to the ER for an SMA kid.
Kyle joined the chess club, and he's getting better at it. He desperately wants to beat his dad.
Chris says there has been one major development in the family, but it's "sort of a huge downer." He and Cassandra got divorced in December 2014.
"I think maybe we were just fighting this fight too individually rather than collectively," he says. "The marriage paid the price for it."
When they broke the news to their kids -- the Byrds also have a 12-year-old daughter, Jenna -- there were tears, and Lauren raised her hand.
"Where are we going to live?" she asked.
When parents of special-needs children get divorced, it's far more complicated. You can't exactly split up a house when it's retrofitted with ramps and heavy medical equipment. Cassandra and Chris wanted to make their kids' lives as normal as possible. So they devised a plan. Every two weeks, the parents alternate living in the house, and the kids stay put.
Upon hearing that they didn't have to move or change schools or friends, the kids' tears dried up and their fears were allayed. Cassandra doesn't get why people think it's so amazing that they've seamlessly handled the twice-a-month disruption in their lives.
"If you think about it, there's only two ways for it to go," Cassandra says. "It goes like this, or it's such a mess, like horrible, chaotic fighting, lawyers, unreasonable expectations and money fights. There's not anything in between.
"We've never really disagreed about what's best for them. Best of times, worst of times, it's pretty cut and dried."
Jenna helps out with her brother and sister, and doesn't complain about it. Chris worries she does too much. Though the twins shared the same womb and were born just two minutes apart, Kyle and Lauren are dissimilar. They dream differently. Lauren is the optimist. She's convinced there will soon be a cure and that she will ride a bike and dance with her dad. All of her dreams involve her legs moving, and she's social and happy and wants to please people. She gets A's in school, made the president's list and went to Disneyland for her Make-A-Wish trip. She wanted to be a princess.
Lauren's body is stronger than Kyle's. She can turn herself and sleep through the night -- Kyle needs to wake one of his parents up at night to move him -- and can hold a pencil and write for longer. Kyle tires easily, and when he gives up on something, he can wrongfully be perceived as being lazy.
He is the realist. He's in his wheelchair in most of his dreams, not walking. The kid who wowed the Diamondbacks three years ago with his wealth of baseball knowledge now obsesses over video games. Sometimes, he goes to the school nurse and asks if he can go home. The nurse will ask if he's sick, and Kyle says no, he just wants to go home and play Nintendo.
"Lauren is sunshine and cotton candy and unicorns and fantasy," Cassandra says. "[Kyle] is more like, 'Yeah, I guess I won't be walking.' He wants to invent something where he can go underwater with his wheelchair or somehow fly with his wheelchair."
Kyle still looks forward to going to Diamondbacks games. Though his family has half-season tickets, they only make it to about five games a year. Most of the games are at night, which makes it too hard. Bedtime is a rigorous process of machine hookups, and it's not something they want to do close to midnight.
But when they go to the ballpark, people immediately recognize Kyle. Bobby Freeman, the Diamondbacks' organist, hangs out with them when he's not playing, and the kids get a kick out of it. His organ is situated near the Byrds' seats. When Kyle gets hot, Freeman lets them plug in a miniature fan in one of his outlets.
And Goldschmidt still remembers Kyle. He always makes time to talk to him and signs whatever he wants.
One of the biggest hopes Chris had for the My Wish show was that it would help raise awareness for SMA. Much has changed on the research front in the past three years. When Kyle's piece aired in 2013, there were three drug programs in clinical trials. Now there are six.
"We're very hopeful overall about the state of current research," says Megan Lenz, communications manager at Cure SMA. "Every program that moves through is one that can move us potentially closer to that goal of a cure."
Chris is skeptical over how much it could help his kids at this point. They've had nine years of deterioration to their bones and muscles. But he doesn't discourage Lauren from being hopeful, or Kyle from just being himself.
"They're not playing the why-me card," he says. "I have not heard that yet. It's just, 'Will I be able to do this?' And I don't know."
