Mishawaka, Ind. If you're looking for a great family event this Saturday and want to help a find a cure for a disease that kills 90 percent of babies before the age of two, then Bethel College is the place to be.
It's the first annual Ella's Walk-n-Roll, a 2K and 5K family event to support a little gal I first introduced you to last year, who suffers from spinal muscular atrophy.
Ella and her family and other SMA babies will be taking part in the walk which they hope will raise awareness.
Their vision is a world where SMA is treatable and curable and they desperately need your help.
You first met little Ella Hunt in January of last year, shortly after she was diagnosed with Spinal Muscular Atrophy, Type 1, the most severe form of SMA.
They got very little information from the hospital as to how to treat a baby with SMA.
“We were sent home and basically told to plan a funeral,” says Erica Hunt, Ella’s mother.
Instead the Hunt's found out everything they could about SMA and got Ella to doctors who understand the disease.
And that's why the Hunt's are on the Bethel College Campus getting ready for her Ella's Walk-n-Roll this Saturday.
“It's basically your Lou Gehrig's or your ALS for children,” explains Erica. “There's no ability for her to building muscle tone, there's no ability for her to develop a swallow or have full respiratory function, hold her head up.”
Which means Ella is physically dependent on her family for every movement she makes, but her mind is just like any other two year-old.
“Mentally smart little cookie, she's got her mind that's for sure,” says Erica.
And while Ella is thriving, Dan says something as simple as a cold can be life threatening for SMA babies.
“Spent three weeks in the ICU total, had to be intubated, on oxygen,” explains Dan Hunt Ella’s father.
Erica says raising money is important, but they also want to raise awareness. Neither she nor Dan knew they were carriers. Shockingly 1 in 32 people carries the gene.
“If a family knows that they're having an SMA child or they get their child tested there's so much more they can do on for early intervention,” says Erica.
The Hunt's planned Saturday's walk close to Ella's 2nd Birthday, which is August 2.
A birthday they never believed they would celebrate and are not taking for granted.
“Two is really considered a miracle birthday,” says Erica. “She is our warrior you know. She's what we live for and we've learned in each day because we're not promised tomorrow.”
The Hunt's already have about 100 people signed up to walk Saturday at Bethel but are hoping lots more families will come out and support Baby Ella and all the other children battling SMA.