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Published November 05, 2015
When Zailynn Mars was diagnosed with a rare, incurable condition at 3 months old, her family did not set out to shelter her from the outside world. Instead, they created a bucket list for their newborn to help her experience all that she could during her limited lifespan, which doctors predict will be cut short to only two years.
“As a father to a little girl, it’s heartbreaking,” Cory Mars, Zailynn’s father, told WBAY-TV 2. “These kids, they don’t deserve any of this.”
The news station reported that the Mars family, of Neenah, Wisconsin— about 100 miles north of Milwaukee— has already enjoyed a visit from Santa Claus, and Cory has walked his daughter down the aisle.
“We’re making the best of the situation as possible and making her as comfortable as possible,” Cory told WBAY-TV 2.
Little Zailynn suffers from a severe form of spinal muscular atrophy (SMA). SMA is a genetic disorder that causes the loss of motor neurons in the spinal cord and brain, affecting the control of muscle movement.
According to the National Institutes of Health (NIH), the condition leads to the loss of muscles necessary for simple tasks like crawling, walking, sitting up and controlling head movement. People with some types of SMA typically have normal life expectancies and can get by with wheelchair assistance. But in severe cases of SMA, like Type I— the type Zailynn is diagnosed with— this nerve loss eventually causes the muscles important for breathing and swallowing to waste away. The NIH estimates that all types of SMA affect 1 in 6,000 to 1 in 10,000 people worldwide.
As the disorder robs Zailynn of her ability to move, the Mars family is doing their best to tick off all the items on her bucket list. According to ABC News, other things they’ve already completed are a trip to the Milwaukee Zoo, painting a picture and dressing up like a princess, while those that remain include going to Disneyland, making a snow angel and seeing the ocean.
Here's what else is left:
-Take a boat ride
-Get on "The Ellen DeGeneres Show" to spread awareness about SMA
-Go fishing and catch a fish
-Attend a Brewer's game
-Play in the leaves
-Build a snowman
The family plans to host a prom on Saturday, where the now 8-month-old Zailynn can enjoy the dance she likely won’t get the chance to as a junior or senior in high school.
“I’m very excited for her to be able to enjoy us holding her, dancing with her, seeing other kids with her,” Katie Mars, Zailynn’s mother, told the news station. “She loves other kids, she just lights up and smiles. And she loves to giggle, and it will mean the world to me.”
The Mars family is raising awareness and funds for Zailynn’s treatment on their GoFundMe page and on Facebook. They also are encouraging people to donate to the organization Cure SMA to help researchers identify a cure.