'These little kids are warriors': Toddler living with spinal muscular atrophy

When Mindy Wiley was expecting her second child, doctors ran several genetic tests.

And they all came back normal.

She and her husband, Cameron, were expecting a healthy baby girl, and at first it seemed Emma Wiley was just that.

By the time she was 2 months old, though, they were seeing signs she was struggling.

“We knew by 2 months old she wasn’t as strong as she should be, but they wanted to wait it out a bit and see because it wasn’t too many red flags,” said Mindy, an Ottawa native and resident of Woodridge. “By 4 months old, there were significant red flags, but we were referred to physical therapists instead of a neurologist at that point.”

Emma was eventually referred to a neurologist and was diagnosed with spinal muscular atrophy (SMA), Type 1. SMA is a rare neuromuscular disorder that diminishes physical strength by causing a loss of motor neurons, leading to progressive muscle wasting and taking away the ability to walk, eat and even breathe. Type 1 is the most severe form of SMA.

Fortunately for Emma, a treatment for SMA had just hit the market when she was diagnosed. She’s been receiving treatment for two years and just last week turned 3 years old.

Prior to treatment, 90% of babies diagnosed with SMA, Type 1, were not expected to live past the age of 2.

“These little kids are warriors. They are so brave and they have to fight through so many hard doctor appointments that even a healthy adult would find tough to go through,” Mindy said. “Right now she’s playing and laughing. She’s nonverbal still at the moment, but, man, she communicates through her looks and through her smiles and her eyes. She’s a happy, laid back little girl who’s so brave and such a fighter.”

Since having Emma, Mindy has become an advocate for SMA and stresses the importance of an early diagnosis.

Most babies with SMA, Type 1, are diagnosed between 1 and 4 months old, Mindy said, but Emma was almost 6 1/2 months old.

If Emma had been diagnosed as a newborn, Mindy said she could be standing and possibly taking steps by now.

“But it’s such a progressive disease that once their motor neurons die, you can’t gain that amount of strength back because your body is already too progressed to make that kind of recovery.

“However, without that treatment, she might not be alive, or might not be breathing on her own, or might not be able to move at all. So we’re very thankful for the treatment and where she is, but had we had a more urgent diagnosis we could have had much better circumstances.”

Though the medication is helping to preserve her life, Emma has significant muscle weakness and will continue to need extensive medical support. Emma sees many specialists and requires intensive therapy multiple times a week. She relies on numerous pieces of medical equipment to survive at home and requires around-the-clock specialty care.

Emma soon will need an array of items and services to accommodate her needs, costing more than $150,000. Initial costs include a power wheelchair, an accessible van and several modifications to the family’s home.

To help ease expenses, a benefit is planned for Saturday, Aug. 10, at the Knights of Columbus Hall in Ottawa. The event will include food, music, dancing, silent auctions, raffle baskets, a 50/50 drawing and activities for kids.

Benefit for The Amazing Emma

• When: 3 to 8 p.m. Saturday, Aug. 10

• Where: Ottawa Knights of Columbus Hall, 401 W. Main St.

• Tickets: theamazingemma.org, Mindy Wiley at 815-252-0723 or at The New Chalet, 514 State St., Ottawa. Advance ticket purchase is requested.