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as changed on the research front in the past three years. When Kyles piece aired in 2013, there were three drug programs in clin

in Weihnachts-Forum von Planet Xmas 27.08.2019 13:36
von jcy123 • 5.628 Beiträge

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.Andrew Whitworth Youth Jersey . Arsenal failed to take full advantage of its main rivals stumbles on Saturday as substitute Gerard Deulofeu levelled with a hard shot from a tight angle in the 84th minute to give Everton a deserved point. Ahead of a crucial fortnight that will see them play against Napoli in the Champions League, Manchester City and Chelsea, Arsenal leads by five points ahead of Liverpool and Chelsea. Gerald Everett Youth Jersey . The 29-year-old Baines has established himself as one of the top attacking full backs in the country and was the subject of two bids from United during the last off-season. Everton manager Roberto Martinez says that keeping Baines at the club is a "massive boost and exciting for the future" because he brings "maturity and football knowledge in a very specialized position on the pitch" and an "infectious and positive influence to the rest of the squad. http://www.footballramsshop.us/authentic-eric-dickerson-rams-jersey/ . "It was nerve-wracking, but we pulled through," said Collaros, who threw four touchdown passes to lead the Toronto Argonauts (8-4) to a 33-27 win over the Calgary Stampeders (9-3) in front of 28,781 fans at McMahon Stadium. Deacon Jones Jersey .ca NBA Power Rankings, ahead of the Miami Heat and San Antonio Spurs. Robert Woods Womens Jersey . Those lessons were more than enough to overwhelm the Utah Jazz. Lou Williams scored 25 points and the Hawks continued their offensive upswing as they rolled to an easy 118-85 victory over the Jazz on Friday night, winning their third straight and for the fourth time in five games.ANAHEIM, Calif. -- The Anaheim Ducks have sent left wing Mason Raymond, right wing Nick Sorensen and defenseman Jacob Larsson to the minors in a roster shake-up after their 1-3-1 start to the season.The Ducks also recalled defenseman Shea Theodore and centers Joseph Cramarossa and Michael Sgarbossa on Saturday.Raymond hasnt scored in his first four games with the Ducks, who signed the NHL veteran in July. Sorensen and Larsson are young Swedish prospects who made the opening-night roster out of training camp.dddddddddddd.Theodore played 19 regular-season games and six postseason games for the Ducks in his NHL debut last season. He is considered Anaheims top defensive prospect.Cramarossa and Sgarbossa narrowly missed making the Ducks opening roster, instead beginning the year in the AHL with San Diego. ' ' '

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