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Rare Disease

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NEWS
By JENNIFER FITCH | waynesboro@herald-mail.com | November 27, 2011
Doll Amsley remembers her 16-month-old great-niece blowing her kisses the last time she saw the girl alive. Alyssa Troia succumbed Oct. 30 to the genetic disease she battled throughout her young life. It's the same disorder diagnosed in her older brother, Corbin. Amsley organized a bingo Sunday at the Mercersburg Sportsmen's Club to benefit her niece's family. As they arrived for the event, family and friends offered encouragement to Alyssa's mother. “If you met her, she'd have your heart in the first five seconds.
LIFESTYLE
By MARIE GILBERT | marieg@herald-mail.com | August 18, 2012
Most days, Alli Rogers is in pain. This is the reality of the young woman's life as she battles a rare disease - one for which there is no cure. She has been in and out of hospitals, has had three surgeries, with the most recent requiring three blood transfusions. She has had a partially collapsed lung and kidney failure. And when she's not undergoing treatment, she has a regimen of daily medications. Despite these challenges, the 24-year-old doesn't allow herself to feel defeated.
NEWS
January 16, 1997
By LISA GRAYBEAL Staff Writer, Waynesboro WAYNESBORO, Pa. - Two-year-old Caleb Matthew Reely knows that something's not quite right with him. Though he's as active as most children his age, Caleb's parents, Richard and Louise Reely of Five Forks Road, said their only son instinctively knows to regulate his play time so he doesn't get too tired. He will rest if he feels a lot of pain. "He has his down times," Richard said. What he doesn't know is that he may not live for more than six to nine years if his rare blood disease, known as Wiskott-Aldridge Syndrome, can't be treated.
NEWS
By ANDREA ROWLAND | January 9, 1999
SMITHSBURG - The plump, fair-haired toddler rested limp as a rag doll in his mother's arms as she talked about the "day the world fell apart. " That was Nov. 10, 1998, the day Dawn and Vincent Cassady Sr. were told their only child was dying of a rare disorder known as Tay-Sachs disease. The diagnosis capped more than a year of worry by the Smithsburg couple that their baby boy, Vincent, wasn't developing as expected. It took doctors at the University of Maryland School of Medicine in Baltimore to tell them he had Tay-Sachs, an inherited disease that always is fatal.
NEWS
December 11, 1997
Family seeks help to deal with their child's rare disease It's the Christmas season and with two small children, Kelly Moser ought to be getting ready for a family-style celebration. But instead of decorating the house, Moser spends her days tending the heart monitor and making sure the oxygen tube stays attached to her baby, Cody Fraley. Born Oct. 23, Cody has a breathing problem that Moser says neither his own pediatrician nor the doctors at the Johns Hopkins University Hospital have been able to figure out. Despite a helicopter trip and a stay at Hopkins, no one is 100 percent sure what's going on with this child.
NEWS
By KATE S. ALEXANDER | kate.alexander@herald-mail.com | January 13, 2011
Winter Troia does not speak with the voice of a mother going through hell, even when she describes what's happening to her children as a nightmare. Her tone is steady. Her words matter of fact, even positive at times. "They tell me this is his last good year," she said of her son Corbin, who, at nearly 3 years old, lives with a rare disease known as metachromatic leukodystrophy or MLD. Reached by phone at Duke University Medical Center in Durham, N.C., Troia said she was there, not with Corbin, but with her 7-month-old daughter, Alyssa, who also suffers from the same disease.
NEWS
By STEVEN T. DENNIS | June 11, 1998
An Army veteran and Hagerstown native who battled back from a crippling disease has received a long-overdue medal 17 years after leaving the service. Joe Shelleman, 55, of Grand Junction, Colo., spent his early years in Hagerstown and joined the Army Reserve in 1962 before being called up to active duty in 1965. In 1981, while stationed in South Korea as a protocol driver, he was told he would be awarded the Joint Services Commendation Medal. Before the honor could be officially bestowed on him, he was stricken with Guillain-Barre syndrome during a softball game.
NEWS
By Staff Sgt. SHERREE GREBENSTEIN | 167th Airlift Wing Public Affairs Office | July 27, 2011
Thirty minutes may not seem like a long time to some, but spent creatively it can help make a difference in a life. Just ask Master Sgt. Tim Blankenship of the West Virginia Air National's 167th Airlift Wing in Martinsburg, W.Va. Blankenship's entry to design a racecar for Toyota's Sponsafier 3 contest earlier this year bested more than 45,000 entries. And he didn't have to search far for an inspiration when coming up with a unique design for the Toyota Camry stock car. The Berkeley Springs, W.Va., man chose the logo and two-tone pink color scheme of "Chelsea's Hope" for the race car's signature design.
NEWS
by KEVIN CLAPP | March 25, 2003
kevinc@herald-mail.com His words come slowly, deliberately, as if each syllable weighs a ton and Lester Stambaugh labors to lift each one. Speech is a struggle. The 31-year-old Hagerstown man is fatigued, felled by a liver disease sapping his strength and putting his life in danger. Since Wednesday, Stambaugh and his wife Suzanne have been in Jacksonville, Fla., where he has undergone evaluation at St. Luke's Hospital, Mayo Clinic for placement on its transplant list.
NEWS
January 13, 2005
Editor's note - Please be as brief as possible when calling Mail Call, The Daily Mail's reader call-in line. Mail Call is not staffed on weekends or holidays so it is best to call Mail Call during the week. The Mail Call number is 301-791-6236. You are welcome to leave a recorded message on any subject, but some calls will be screened out. You must include your town or county of residence. Here are some of the calls we have received lately: "Years ago, there was a mayor in Hagerstown who had a rare disease and it took a long time for him to be diagnosed.
ARTICLES BY DATE
LIFESTYLE
By MARIE GILBERT | marieg@herald-mail.com | August 18, 2012
Most days, Alli Rogers is in pain. This is the reality of the young woman's life as she battles a rare disease - one for which there is no cure. She has been in and out of hospitals, has had three surgeries, with the most recent requiring three blood transfusions. She has had a partially collapsed lung and kidney failure. And when she's not undergoing treatment, she has a regimen of daily medications. Despite these challenges, the 24-year-old doesn't allow herself to feel defeated.
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NEWS
By RICHARD F. BELISLE | richardb@herald-mail.com | December 2, 2011
An effort to replace the 500 units of blood given to a Charles Town woman over her lifetime already is showing promise that it will succeed, the woman's husband said Wednesday. Lee Snyder, whose wife, Cynthia, died July 6 at the age of 58 after a lifelong battle with Diamond Blackfan Anemia (DBA), said a blood drive held in her name in mid-November bought in more than 50 units of blood. Cynthia Snyder was diagnosed with the rare disease when she was 6 weeks old. DBA, named for the physicians who described it in 1938, is the failure of bone marrow to produce red blood cells.
NEWS
By JENNIFER FITCH | waynesboro@herald-mail.com | November 27, 2011
Doll Amsley remembers her 16-month-old great-niece blowing her kisses the last time she saw the girl alive. Alyssa Troia succumbed Oct. 30 to the genetic disease she battled throughout her young life. It's the same disorder diagnosed in her older brother, Corbin. Amsley organized a bingo Sunday at the Mercersburg Sportsmen's Club to benefit her niece's family. As they arrived for the event, family and friends offered encouragement to Alyssa's mother. “If you met her, she'd have your heart in the first five seconds.
NEWS
By Staff Sgt. SHERREE GREBENSTEIN | 167th Airlift Wing Public Affairs Office | July 27, 2011
Thirty minutes may not seem like a long time to some, but spent creatively it can help make a difference in a life. Just ask Master Sgt. Tim Blankenship of the West Virginia Air National's 167th Airlift Wing in Martinsburg, W.Va. Blankenship's entry to design a racecar for Toyota's Sponsafier 3 contest earlier this year bested more than 45,000 entries. And he didn't have to search far for an inspiration when coming up with a unique design for the Toyota Camry stock car. The Berkeley Springs, W.Va., man chose the logo and two-tone pink color scheme of "Chelsea's Hope" for the race car's signature design.
NEWS
By KATE S. ALEXANDER | kate.alexander@herald-mail.com | January 13, 2011
Winter Troia does not speak with the voice of a mother going through hell, even when she describes what's happening to her children as a nightmare. Her tone is steady. Her words matter of fact, even positive at times. "They tell me this is his last good year," she said of her son Corbin, who, at nearly 3 years old, lives with a rare disease known as metachromatic leukodystrophy or MLD. Reached by phone at Duke University Medical Center in Durham, N.C., Troia said she was there, not with Corbin, but with her 7-month-old daughter, Alyssa, who also suffers from the same disease.
NEWS
By MARLO BARNHART | May 24, 2008
Editor's note: Each Sunday, The Herald-Mail publishes "A Life Remembered. " This continuing series takes a look back -- through the eyes of family, friends, co-workers and others -- at a member of the community who died recently. Today's "A Life Remembered" is about Sharon Rucker, who died May 9 at the age of 58. Her obituary was published in the May 17 edition of The Herald-Mail. In what she titled "A Living Portfolio," Sharon Rucker said she saw herself as an explorer, and she kept the notebook to chronicle the journey into her faith.
NEWS
by JANET HEIM | June 16, 2006
If you walked past Allyson Semler today, she would probably follow your movement with her eyes. That's pretty normal for a 1-year-old, except that the Hagerstown girl has a rare disease. And since having an operation recently, she is beginning to do lots of the functions normal to children her age. "It actually is amazing. She's like a different person," said her mother, Jaime Lynn Connor Semler. Allyson was born in April 2005, with Moyamoya disease, a rare disorder that causes obstruction of major blood vessels around the base of the brain.
NEWS
by KRISTIN WILSON | May 15, 2006
For nine years Ronnie Grove didn't know a single person who could understand what she was going through. After she was diagnosed with primary lateral sclerosis (PLS) - a disorder that few people, even doctors, have heard of - she felt isolated. And with little information about her disorder, she believed she was dying. But then, Grove, 62, of Berkeley Springs, W.Va., signed up for a newsletter produced by the National Organization of Rare Diseases, and she began to learn of others who have the same rare nervous system disorder.
NEWS
January 13, 2005
Editor's note - Please be as brief as possible when calling Mail Call, The Daily Mail's reader call-in line. Mail Call is not staffed on weekends or holidays so it is best to call Mail Call during the week. The Mail Call number is 301-791-6236. You are welcome to leave a recorded message on any subject, but some calls will be screened out. You must include your town or county of residence. Here are some of the calls we have received lately: "Years ago, there was a mayor in Hagerstown who had a rare disease and it took a long time for him to be diagnosed.
NEWS
by KEVIN CLAPP | March 25, 2003
kevinc@herald-mail.com His words come slowly, deliberately, as if each syllable weighs a ton and Lester Stambaugh labors to lift each one. Speech is a struggle. The 31-year-old Hagerstown man is fatigued, felled by a liver disease sapping his strength and putting his life in danger. Since Wednesday, Stambaugh and his wife Suzanne have been in Jacksonville, Fla., where he has undergone evaluation at St. Luke's Hospital, Mayo Clinic for placement on its transplant list.
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