The family of a terminally ill little girl is making sure they get to spend as much time as possible with their daughter, which is why they created a bucket list for their sweet baby.
Zailynn Mars was diagnosed with spinal muscular atrophy when she was only three months old. The disease affects the motor nerve cells, making it nearly impossible for a person to talk, walk, or even breathe. Doctors predicted that little Zailynn would only live to be two years old. Rather than sheltering her in a bubble and spending countless nights in the hospital, Zailynn’s parents decided they were going to make the most out of her life and let her experience as much as she could while she is alive.
“That day it kind of plays over in my head pretty much every day,” Zailynn’s father Cory Mars of Neenah, Wisconsin, about 100 miles north of Milwaukee, told ABC News . “Her life expectancy, rarely do they [children] see over 2 years old. I couldn’t stand there and have someone tell me that my daughter wasn’t going to be with me for as long as she should be, until I’m an old man.”
Family checking off bucket list for baby with terminal illness: https://t.co/ExQ027FXNd pic.twitter.com/Lb4X9dK79P
— Fox News (@FoxNews) November 5, 2015
“Children that have SMA, there’s a quality of life you have to decide as a parent,” he added. “We want her to be happy and experience the fun things. When it comes to her staying in a hospital more time than she’s been out of a hospital, that’s where I draw the line.”
Zailynn’s parents, along with her three-year-old brother Xzander, created a list with 48 experiences they want to share with Zailynn while they can. The experiences include small things like going to the movies, to milestones that Zailynn wouldn’t have been able to reach, like walking down the aisle with her father, which they have already completed.
“Number one is to have daddy walk me down the aisle,” Mars said, explaining that he walked Zailynn down the aisle at a friend’s September wedding. “Being able to walk my daughter down the aisle at her wedding is the best thing I’d ever do that I’d never be able to do.”
Family makes bucket list for terminally ill baby: “We are trying to create memories…” https://t.co/C885gnJVvs pic.twitter.com/Fvj7sqF5Yh
— ABC News (@ABC) November 6, 2015
The family shared their complete list on Facebook , noting which experiences they had already done.
Zailynn’s Bucket List
Daddy walks me down the aisle–completed.
Milwaukee Zoo–completed.
Family pictures –scheduled.
Sibling pictures–scheduled.
Visit a farm–completed.
Shedd Aquarium in Chicago, Illinois
Disneyland
Go to a movie
Go to the beach
Visit the ocean
Draw my name in the sand–completed.
Get on the Ellen show to get SMA awareness out there
Boat ride
Children’s museum–completed.
Paint a picture–completed.
Celebrate life on the 12th of every month—completed.
Dress up like a princess–completed.
Get my nails painted–completed.
Go on a train ride
Brewers game
Football game
Play in the leaves
Go fishing and catch a fish
Get held by the fireman for a picture–completed.
Make a snow angel
Build a snow man
Celebrate Christmas
Host a first birthday/meet and greet–scheduled.
Go to prom and have pictures taken–scheduled
Go to a concert
Meet John Cena and the Rock
Get a ride on a horse
Get sent flowers–done
Send a gift to someone special–completed.
Have a picnic at the park
Let a balloon go–done
Sing karaoke with daddy–scheduled.
Celebrate Thanksgiving–scheduled.
Go down a slide at the park
Go for a sled ride
Meet Santa get a picture with him–completed.
Go swimming–completed.
Bake cookies–scheduled.
Be in two places at once
Get pictures taken in my mom’s wedding dress–completed.
Go to a parade
Hang out with a ninja
Have someone sing to me–completed.
Hang an ornament on the Christmas tree–completed.
Watch daddy and mommy carve pumpkins–completed.
Receive a letter from a pen pal–completed.
Go mudding–completed.
Mars said the family’s main priority is to enjoy their time with Zailynn and help promote awareness for SMA.
“With my daughter’s story, we want her to bring a positive impact on everybody’s life,” Mars said. “She a very excited baby — happy to see anybody. If you look into her stroller, you’ll definitely get a smile. She’s 100 percent a daddy’s girl.”
The family is raising awareness of SMA and raising funding for Zailynn’s treatments through their GoFundMe page and Facebook. Over the past two months, the family has raised $10,520 of their $50,ooo goal on the fundraising site.
According to CureSMA.org, SMA is caused by a mutation in the survival motor neuron gene 1 ( SMN1 ) and affects 1 in 10,000 babies. Approximately 1 in every 50 Americans is a genetic carrier.
[Photo via GoFundMe]