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Government Bill Passed in 2007:   Update on 04/04/07   on bill I was in the capital in Charleston when the newborn testing bill was being signed on the 2ed of April 2007 I wanna thank the people for letting me be there Thank you all

Old news Update on 03/11/2007 on bill The newborn testing bill HB2583 passed lastnight on 03/10/2007 at 10:15pm I was at the capital in Charleston when the bill was passed. I was so happy. I would like to give thanks to Max, Cady, Gretchen Alger Lin, Gretchen Murphy, OAA, Cares, March of Dimes, Leslie and all The State Senators that was there. for letting me be a part of this. Thanks you guys! I will let you guys know more as it comes. If there is anymore.

Old news Update on 03/07/2007 on biil Greetings! HB2583 was pulled suddenly from the legislative calendar this morning. Senators across the state need to hear from supporters of expanded newborn screening NOW if there is any chance of having this bill pass. Please call as many senators as possible urging their support of HB2583. As well as pass this message on to your friends and family. (A complete list of Senators with their office phone numbers is below and attached.) An example of what you might say follows: ------------------------------------------- My name is ______ and I am calling in support of HB2583. IT IS EXTREMELY IMPORANT THAT YOU PASS THIS BILL! I am the parent of a child affected by _______. This condition is not being tested for in West Virginia and my child almost died because of the state’s failure to screen for it at birth. [tell your story here] Our baby and family were left to suffer unimaginable physical, emotional and financial trauma, all of which could have been prevented by a simple test. Without expanded newborn screening 23 newborns are at risk of dying unnecessarily this year. YOUR SUPPORT OF HB2583 IS VITAL TO SAVING THE LIVES OF WEST VIRGINIA BABIES. PLEASE PASS HB2583 Email me for #s to call about this at kickbutt162000@yahoo.com Old news I got this in my email today. Update on 03/06/2007 on bill! First and foremost I wanted to say thank you for all your support thus far in West Virginia . Hor the bill that is trying to be made for the Newborn Screening in West Virginia. I hope the bill is passed! Keep you all posted on it. Update on the bill. The bill was passed!!!!!!!

Old news I wrote a story for the bill that is trying to be made for the Newborn Screening in West Virginia. I hope the bill is passed! Keep you all posted on it. Update on the bill. The bill was passed!!!!!!!

The Mystery Boy: West is now 6-years-old. He's going blind. He can't talk or even crawl. His feet get so cold that he gets frostbite sores indoors, but doctors don't know why. CBS>

Family Seeks Answers To Boy's Mystery Illness Image Bridgette Bornstein Reporting (WCCO) A Twin Cities family is on a desperate search for answers. Their little boy is fighting for his life and doctors can't figure out why. When little Zach West was born, his family was so happy to have such a healthy little boy. "Zach was just a normal little boy. One of my biggest memories, he was in the bathtub and he goes, 'all done momma, all done,'" said Zach's mother Rachele LaCount. Zach West seemed to be a perfectly healthy baby. But at 17-months-old, Zach developed odd symptoms -- the way he walked and the way his eyes moved. He saw doctor after doctor. "You go from one minute just having a perfect little boy to struggling everyday for his life, and that's what Zach does -- Zach is fighting for his life," said LaCount. Zach is now 6-years-old. He's going blind. He can't talk or even crawl. His feet get so cold that he gets frostbite sores indoors, but doctors don't know why. "It's definitely a mystery. Doctors always go, 'there's my mystery boy,'" said LaCount. "To find an answer, we've been trying and it's really been elusive. We have not been able to find an answer," said immunologist Dr. Ralph Shapiro. "One of the questions Rachele asked me just last week was, 'At what point do you stop looking and at what point do you stop trying,' said Nurse Practitioner Kristin Epland. "I said, 'You have a six year old, you don't stop." Zach's family wants him to experience everything possible. He plays t-ball, sled hockey and mom just signed him up for downhill skiing. "We feel like we're cramming so much in such a short time, like it's a race against time," said LaCount. It's a desperate hunt for the answers that could save Zach's life. "He probably has just a few years left, but I was also told that a couple years ago, and he's still here and he's still fighting, so we're going to fight for him," said LaCount. Doctors do know Zach has some sort of mitochondrial disease, but that doesn't cover all his symptoms. There's something else at play here. Zach's Mom hopes they can travel to Atlanta soon where there are some upcoming drug trials that might help her son. (© MMVI, CBS Broadcasting Inc. All Rights Reserved.) (Update on this story They found what the disorder was but I forget what it is now.)