‘SMAsh SMA Challenge’ gives a new spin on ‘ALS Ice Bucket Challenge’
February 4, 2015 - als
WEST PALM BEACH, Fla. – There’s a new take on a “ALS Ice Bucket Challenge,” and a idea is to lift recognition for a depot disease.
Katie Myers’ one year aged son, Kaden, is partial of a movement.
In September, Kaden was diagnosed with spinal robust atrophy, or SMA.
“We wish recognition so people can get tested before they try to conceive, either they know if they’re a conduit or not,” Katie says.
Katie says she didn’t even know about a illness before she found out her son had it.
According to a organisation Cure SMA, one in fifty people is a conduit of a depot disease.
Many babies who have it don’t make it to their second birthday, according to Katie.
To assistance lift recognition of a disease, people opposite a nation are creation videos, labeling them #SMAshSMA.
Those who make a videos are asked to present to Cure SMA .
Just like a “Ice Bucket Challenge,” those who make a videos are asked to tab during slightest 3 friends, so they can make a video, too.
“We wish everybody to take videos of themselves outstanding a objects to pieces,” Katie says.
Kaden’s video featured a baby outstanding an egg onto a building from his highchair.
“What we would like to pound some-more than anything is all of his medical equipment,” Katie says.
Kaden has some-more than a dozen pieces of medical apparatus in his family’s home. Katie says he uses any square each day.
“I wish this illness didn’t exist so we could pound divided all of them,” she says.
Every day, Kaden’s relatives work tough to keep him strong.
SMA causes muscles to deteriorate, so they grow diseased over time.
“It’s unequivocally tough to know that your child is going to get weaker over time. To know that carrying mommy, son dances in a destiny might not happen,” Katie says.
“Instead of sophistry soccer practice, lane and margin we’ll be sophistry 6-10 doctors’ appointments a week,” she adds.
The idea is to get Kaden into a clinical hearing for SMA, though he’s not means to do that until he’s two-years-old.