Parents of Baby Suffering a Rare, Fatal Disease Create Bucket List of Memories With Her
A Wisconsin family has created a bucket list for their dying, eight-month-old baby.
Cory and Katie Mars don’t have much time left with their baby daughter. But they are creating memories to last a lifetime.
Little Zailynn, a happy eight-month-old baby, has spinal muscular atrophy, a disease that is stealing her ability to breathe and leaves her unable to sit up.
Her Wisconsin parents have created a bucket list of more than 50 things they want to do with their daughter before time runs out. So far, they’ve scratched off going to the zoo, dressing up like a princess, visiting a farm and walking down the aisle with her father (which was really daddy carrying Zailynn down the aisle of a friend’s wedding).
“The bucket list was my wife’s idea,” Cory Mars, 25, told INSIDE EDITION Thursday. “She said ‘I need to come up with a list of things we can do as family.’ What we’re doing is making memories with our daughter. We’re making this for our whole family. When she’s gone for years, we’ll still have these memories.”
Doctors have told the family that most children with Zailynn’s genetic disorder don’t live past the age of two.
“It’s not an easy thing to watch,” Mars said. “She’s happy, she’s content, she’s comfortable,” and that is the most her parents can hope for.
“She spends 95 percent of her time on her back, so she can breathe. Her neck muscles can’t hold her head up,” her father explained.
Zailynn was four months old when she caught a cold. She seemed get better, but then took a radical turn for the worse, Mars said.
He rushed her to the emergency room, where doctors determined she was in extreme respiratory distress. She couldn’t breathe on her own. X-rays showed she had pneumonia, her dad said.
After being transferred to Milwaukee Children’s Hospital, physicians there eventually diagnosed her after a battery of tests.
“I just broke down,” Mars said. “I couldn’t even listen to this man tell me I wasn’t going to have my daughter around (when) I was an old man.”
Zailynn has a three-year-old brother, Exander, who is part of the bucket list activities.
Their parents have decided against invasive procedures to prolong Zailynn’s life.
“We’re essentially letting nature take its course,” her dad said.
“Every day I get with my daughter is a blessing. She has taught me so many things,” he said, breaking into tears. “We just have to play the cards we were dealt… She’s the hero in this. She’s the one who has this disease.
“We’re just her parents.”
Photos Courtesy of Jessica Yngsdal from Simply Unspoken Photography
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