LIBERTY, Mo. — One local family caring for their terminally ill baby will have a play date to remember this weekend.
What started off as a school project has turned into a community event. One local elementary school student is helping out a family in need who he’s never even met.
“Well they told me your child is terminal and going to die within a year, so, I mean, incredible paralyzing grief,” said Grace Grutter, whose daughter Nella was born on August 7, 2013.
When she was around 11 weeks old, Nella was diagnosed with Spinal Muscular Atrophy (SMA), which is an inherited genetic disease where all of her voluntary muscles are dying.
“She needs full time nursing care, we have to suction her frequently, we have to feed her through her tube,” said Grutter.
Baby Nella can’t sit or stand, and eventually she won’t be able to breathe on her own. Most babies with SMA Type 1, which Nella has, die within the first two years.
“My mom had showed me them before, what they were going through, and I felt really bad, and I wanted to do something with them,” said 10-year-old Keanon McNally, who has never met baby Nella or her family.
McNally’s teacher, Jennifer Mann, at Shoal Creek Elementary assigned the class “The Power of One project.” The goal is to help each student experience firsthand how one person can make a difference with simple actions. McNally’s mom knew the Grutters and told him about them.
“It’s really life threatening, and it’s really, really sad, and we wanted to raise money for their medical expenses and their family,” McNally said.
He’s put together an event called ‘Nella’s Play Date,’ which will take place Saturday from 10 a.m. to 12 p.m. at Stocksdale Park.
“He has put so much work into it through Facebook, and reaching out, and wanting to raise money, and he’s put videos on there. It’s just incredible to see how much work he’s put into it, and how much he cares,” said Grutter.
“Just knowing that you did that, and knowing they’ll be so thankful for it, it’s awesome,” said McNally.
Grace says she’s impressed that a someone at such a young age would care this much about a complete stranger, and she’s thankful for the community coming together to help them during this difficult time.
“It’s just a very lonely place when you’re told your child doesn’t have much and it can feel very isolating,” added Grutter.
Nella’s family hopes to start a foundation to raise awareness about SMA. They want to help families going through the same situation.
CLICK HERE for information to the event.
CLICK HERE to help fund Keanon McNally’s campaign
