Avery's bucket list: Phoenix family knows about living life to its fullest

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by April Warnecke

Bio | Email | Follow: @AprilWarnecke

azfamily.com

Posted on May 2, 2012 at 9:22 AM

Updated Wednesday, May 2 at 1:21 PM

PHOENIX -- A 5-month-old Texas baby made headlines around the world this week for the bucket list her parents made for her. 

Baby Avery was born with a form of muscular dystrophy, a genetic disorder called spinal muscular atrophy or SMA for short. According to the SMA Foundation, the relatively rare disease is the leading genetic killer of infants and toddlers. One in between 6,000 and 10,000 children is born with the disease, and one in 50 people, some 6 million Americans, carry the gene for it. According to MDA, one in 40 people are carriers.

The numbers differ among organizations, possibly because those who carry the gene never exhibit symptoms of the disease. Also, SMA is a recessive disorder, which means both parents must carry the gene.

After diagnosing Avery with the most severe form of SMA, doctors delivered a devastating prognosis to her family, telling them their beautiful baby girl wouldn't make it to 3 years old.

Avery's parents tried to make the most of this tragic situation by creating a bucket list of moments they wanted her to experience before she died. They helped their little girl live her short life to its fullest, but they didn't get very far on the list. Baby Avery passed away unexpectedly after one of her lungs collapsed and she went into cardiac arrest earlier this week.

A Valley family knows this heart-wrenching story all too well. 

Cassandra and Chris Byrd have 4-year-old twins, both of whom have SMA. Kyle and Lauren were diagnosed in October 2008 when they were 16 months old.

The Byrds have worked tirelessly to help little Kyle and Lauren know all of life's joys.  When they're not spending days at therapy or doctors visits, the twins are at Diamondback and Coyotes games, ice skating, riding the rides at the train park or visiting Walt Disney World. 

Cassandra said unlike other parents, she and her husband can't assume their children will have a lifetime to experience these things. She hopes that Avery's story will bring about awareness about SMA and inspire donations to the gene-therapy research that could one day cure the disease.

For more about Avery's bucket list, visit averycan.blogspot.com.

To donate to Dr. Kaspar's SMA Gene Therapy program, go to www.the200forsma.com.

To learn more about the Byrds, check out ByrdsForACure.org, the Byrds for a Cure Facebook page or @ByrdsForACure on Twitter.

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