The parents of a baby with a rare genetic disorder are doing all they can to make the most of her limited time.
Zailynn Mars was only three months old when doctors discovered she had a rare and aggressive form of spinal muscular atrophy (SMA). The incurable genetic disorder is wreaking havoc on the baby's spinal cord and brain, slowly stripping away her ability to control muscles needed for walking, sitting, and, eventually, breathing and swallowing. The diagnosis was grim, and doctors didn't mince words with Zailynn's parents, Cory and Katie: Best case, their daughter would only live for two years.
But rather than retreating from the world for the next two years (which, frankly, I'd be tempted to do), the Mars family decided to throw themselves into it and make the most of whatever time they had with their baby. They drafted a bucket list of everything they wanted Zailynn, now 8 months old, to experience while she was alive. "We're making the best of the situation as possible and making her as comfortable as possible," her father explained to WBAY-TV 2.
Already, she's met with Santa Claus, painted a picture, dressed up like a princess, seen animals at the zoo, and been walked down the aisle by her father. This weekend, the Mars family is hosting a prom for her. That's a lot to experience before a first birthday, but the Mars family is far from finished. Some bucket list items are simple but magical parts of childhood: playing in the leaves, making a snowman and a snow angel, seeing the ocean, going for a boat ride, and taking in a baseball game. Other to-do's are once-in-a-lifetime, like getting on The Ellen DeGeneres Show to raise awareness about SMA, and visiting Disneyland.
No doubt the fantastical bucket list provides a much-needed lift for the family, a bright spot to focus on when Zailynn's respiratory ailments make every breath a struggle, and when she's eventually bound to a wheelchair. To help finance the flurry of activities—and help cover expensive medical equipment and treatments—the family has created a GoFundMe page. In just two months, more than $11,000 has poured into #TeamZailynn's coffers (the goal is $50,000). Support is coming in from all corners of the world, as donors offer thoughts and prayers in addition to money.
The love hasn't gone unnoticed. Earlier today, Cory and Katie posted a sweet note on GoFundMe: "Thank you so much for your heartwarming and amazing support for our daughter and her bucketlist. This is truly amazing. I am eternally grateful for everyone and their support. It means [the] world to my family and it means that we are going to cross every thing off her bucketlist with all of your help. You [are] truly amazing and thank you from the bottom of our hearts!"
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Bonnie Gibbs Vengrow is a New York City-based writer and editor who traded in her Blackberry and Metro card for playdates and PB&J sandwiches—and the once-in-a-lifetime chance to watch her feisty, funny son grow up. Follow her on Twitter and Pinterest.