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Alpha Stories

Feathers by the Million

Feathers by the Million
Tuesday, March 20, 2012
The poet Emily Dickinson called hope “the thing with feathers that perches on the soul,” and Leopoldo Fernández Pujals and his wife, Marilina, know all about “the thing” with feathers. Their son Andres was diagnosed with Alpha-1 as an infant and underwent a liver transplant before the age of two. He’s now an active eight-year-old, but the genetic disorder...
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The Day that Alpha 1

The Day that Alpha 1
Tuesday, March 20, 2012
A poem written by Lila M Thomason, in memory of her brother, Leon. When they made my brother Leon, they threw away the mold Too short a life he lived Too short our story told About an eight year race That ended at 42 years old.  He worked hard and he played hard And God that man could run At 34 he was challenged,  By a disease called Alpha 1.  With eyes wide open,...
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Singing lifts Margery’s spirits

Singing lifts Margery’s spirits
Tuesday, March 20, 2012
Margery Eriksson of Berkeley, California won’t let Alpha-1 lung disease stop her from doing what she loves most – singing. The retired elementary school teacher has been singing for the past 21 years with the Oakland Symphony Chorus. The chorus rehearses classical music weekly and performs several times a year for an audience of 3,000 at the Oakland Paramount Theatre, accompanied by...
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Live life to the fullest: Advice from Mary, who does it every day!

Live life to the fullest: Advice from Mary, who does it every day!
Tuesday, March 20, 2012
Mary Pierce is the definition of an athlete: she’s a kayaker and a bicyclist, she lifts weights regularly, she rides her motorcycle and she works full time. And yes, in her spare time, she’s learning to fly a powered paraglider. For the less adventurous among us, powered paragliding amounts to hanging from a harness in mid-air with a big parachute over your head and a motor...
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Former Baywatch star, mother, fashion designer and Alpha

Former Baywatch star, mother, fashion designer and Alpha
Tuesday, March 20, 2012
Melissa Biggs looks like a model – tall, blonde and athletic – or, at least looking at her, you might think she’s somebody you saw in a movie or on television. In fact, she’s all of those things. She plays in a tennis league two or three times a week, runs her own business, cares for her daughter Macy, 12, and is “always, always busy.” She’s not,...
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The life of Vicki Joseph remembered: Memorial booklets are still available celebrating her life "in her own words"

The life of Vicki Joseph remembered: Memorial booklets are still available celebrating her life "in her own words"
Tuesday, March 20, 2012
  Victoria “Vicki” Joseph’s budding career as a playwright and novelist was cut short when she died of chronic rejection of her transplanted lungs on Aug. 2, 2009. Joseph had been a librarian, a criminal defense attorney and a college professor at Elms College in Chicopee, MA, before taking a leave of absence early in 2009 to concentrate on her writing. The year...
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Trine: Who says you need 14 pills a day after transplant?

Trine: Who says you need 14 pills a day after transplant?
Tuesday, March 20, 2012
Trine Engebretsen was being treated in the twelfth hospital to admit her in her short life – she was dying of Alpha- 1 liver disease, and she was only two years old. Her pediatrician told her parents that she was failing quickly. The hospital staff offered to make her as comfortable as possible until her death. Her parents refused to accept that advice. They got a liver transplant...
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Colorado Eagle Scout project encourages Alpha-1 awareness

Colorado Eagle Scout project encourages Alpha-1 awareness
Tuesday, March 20, 2012
Taylor Fittje wants to become an Eagle Scout, and so to reach that rank, he designed a community service project around Alpha-1 awareness. Fittje, of Parker, Colorado, was inspired by his grandfather, Bob Fittje, 63, an Alpha who lives in the same city. “My grandfather was told in 1994 that he possibly had only months to live, but he is still with us today. If he had been...
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