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jcy123 Offline



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23.02.2019 03:01
Lauren from being hopeful, or Kyle from just being himself.Theyre not playing the why-me card, he says. I have not heard that y Antworten

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 Byrds 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 Im not going to stop doing things that make these kids feel good. For a couple of hours, they forget.For a couple of hours, theyre the ones who have an advantage over everybody else.Though they dont get out to the ballpark as much as theyd 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 ESPNs 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. Its hard for me because its like that butterfly effect. What if they could walk, but they werent 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 whove 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 hes getting better at it. He desperately wants to beat his dad.Chris says there has been one major development in the family, but its 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, its far more complicated. You cant exactly split up a house when its 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 didnt have to move or change schools or friends, the kids tears dried up and their fears were allayed. ?Cassandra doesnt get why people think its so amazing that theyve seamlessly handled the twice-a-month disruption in their lives.If you think about it, theres only two ways for it to go, Cassandra says. It goes like this, or its such a mess, like horrible, chaotic fighting, lawyers, unreasonable expectations and money fights. Theres not anything in between.Weve never really disagreed about whats best for them. Best of times, worst of times, its pretty cut and dried.Jenna helps out with her brother and sister, and doesnt 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. Shes 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 shes social and happy and wants to please people. She gets As in school, made the presidents list and went to Disneyland for her Make-A-Wish trip. She wanted to be a princess.Laurens body is stronger than Kyles. 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. Hes 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 hes 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 wont 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 its 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 hes 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 Kyles piece aired in 2013, there were three drug programs in clinical trials. Now there are six.Were 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. Theyve had nine years of deterioration to their bones and muscles. But he doesnt discourage Lauren from being hopeful, or Kyle from just being himself.Theyre not playing the why-me card, he says. I have not heard that yet. Its just, Will I be able to do this? And I dont know. Frank White Jersey . With Parker having a quiet game for once, Nicolas Batum and Boris Diaw provided the scoring as France won its first major basketball title by beating Lithuania 80-66 on Sunday. It was a victory that ended a decade of frustration for Parker and a talented French generation, which lost the final against Spain two years ago and took bronze in 2005. Trevor Cahill Jersey . Team physician Dr. Steve Traina performed the surgery Friday. Robinson was injured in a spill underneath the Nuggets basket during the first quarter of Wednesday nights loss to the Charlotte Bobcats. http://www.royalsteamproshop.com/Royals-Bo-Jackson-Kids-Jersey/ .com) - The Edmonton Oilers and Vancouver Canucks both take aim at their first wins of the season on Saturday, as the Canucks open their home slate at Rogers Arena. Alcides Escobar Jersey . -- Patrick Reed got an early start in golf. Brian Flynn Jersey .Y. -- Sabres forward Drew Stafford has witnessed plenty of turmoil during his eight seasons in Buffalo. STORRS, Conn. -- Connecticut coach Geno Auriemma didnt expect his young Huskies to be undefeated six games into the season and says he has no idea what to expect this month when they face four ranked teams.The No. 2 Huskies (6-0), who returned just two starters from the team that won the programs fourth straight national title last spring, have extended the second-longest winning streak in program and womens basketball history to 81 games. And in the process, theyve already beaten three Top 25 opponents this season, including then-No. 2-ranked Baylor.UConn faces four more ranked teams before January 1, including No. 14 Texas on Sunday and No. 1 Notre Dame on Wednesday in South Bend. The Huskies also play No. 9 Ohio State and No. 5 Maryland before January.We dont have that kind of talent that just blows you away like weve had in the past, Auriemma said this week. That means that every single minute of every day, every practice at every game, theyve got to be tough, hard-nosed and really tough.UConn proved that on Thursday, dismantling No. 15 DePaul 91-46 after taking a 22-1 lead in what was supposed to be a serious test against a high-scoring offense. The Huskies defense held DePaul to 25 percent shooting.Forward Kia Nurse said she and her teammates were aware pundits thought theyd be more vulnerable this season after the graduation of stars Breanna Stewart, Morgan Tuck and Moriah Jefferson. She said Auriemma has challenged this group to maintain the programs traditioon of excellence.ddddddddddddFor him to hold us to that standard and remind us that this is how UConn basketball is played, it lights a fire under us, she said. So when we get out in the next practices, the next games, shoot-arounds, we understand that is the expectation here and that is where we need to be.Sophomore Katie Lou Samuelson said the team is still learning chemistry on the court and once the players figure it out, theyll only get better.Last year we understood the three of them (Stewart, Tuck and Jefferson) would go and do what they do every game, she said. Now we have to figure out, OK, who is going to step up and take shots tonight? Who is going step up and make those passes? Its going to be different every night. So thats always difficult, but its also a great thing for our versatility.Auriemma said he doesnt know if the team will keep playing the way it did against Baylor and DePaul, and hes still not quite sure about the caliber of this group. But, he said thats normal for this time of year.And he expects to know a lot more after the run against ranked teams in December.Theres no guarantee like the past couple years that, yeah we got this, Auriemma said. Its a wait and see. Its a process. I just dont want to take any steps back. I dont know how many steps forward were going to take. I just dont want to take any steps back. ' ' '

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