(WBAY) – A Neenah family has created a bucket list for their 8-month-old, terminally-ill daughter. The family is hoping by fulfilling the list, they can bring joy to their little girl and raise awareness about the disease that will eventually claim her life.
Twice a day, 8-month-old Zailynn Mars receives a special breathing treatment. It’s all to help her deal with the effects of spinal muscular atrophy, or SMA.
Diagnosed just three months ago with the degenerative disease, SMA will slowly take away Zailynn’s motor functions.
Her father Cory Mars says, “They’re giving her the two-year range. They said children with SMA Type 1 doesn’t usually live past two.”
According to the Mars family, 1 in 6,000 children is diagnosed with SMA, in varying degrees of severity. Zailynn has the most severe type, and she is already showing signs of the disease’s progression.
“In August she could hold her head up a little bit for a couple of seconds with support, and now she’s got none of that. She’s got to lay flat pretty much 95% of the time so she keeps her airway clean,” says her mom, Katie Mars.
Despite her illness and the treatments she needs, her parents and 3-year-old brother Xzander are trying to give Zailynn the most fulfilling life possible.
Cory Mars says, “As a father to a little girl, it’s heartbreaking. These kids, they don’t deserve any of this. We’re making the best of the situation as possible and making her as comfortable as possible.”
Part of that comfort was to create a bucket list of activities to complete. Santa Claus has already visited the Mars Family, Cory had the opportunity to walk his baby girl down the aisle, and on Saturday the family is hosting a prom where Zailynn will be the belle of the ball.
Her mom says, “I’m very excited for her to be able to enjoy us holding her, dancing with her, seeing other kids with her. 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 say research is underway to help find a cure for SMA and they’re praying it comes soon, but in the meantime they want to keep sharing Zailynn’s story so other families aren’t blindsided with the diagnosis like they were.
According to Katie Mars, “The main thing is to get the awareness out. That’s what we’re looking for, so more parents are aware, families that are looking to start having children to look into all of that stuff like we didn’t and would have never thought of doing.”
They’re also encouraging people to donate to the CureSMA website to help find a cure for the disease.Copyright 2015 WBAY. All rights reserved.