Amazing Emma Benefit Aug. 10 to help Woodridge 3-year-old with rare, incurable disease

Mindy and Cameron Wiley will never forget the day - Feb. 15, 2017 - when the dream for their baby Emma became keeping her alive.

At 6 months old, Emma was diagnosed with the most severe form of spinal muscular atrophy, like ALS for babies. In August, the family is hosting a benefit for Emma, now 3.

The Woodridge family's dramatic story is one of heartbreak and hope. It's also timely. Emma receives a groundbreaking new treatment.

Before the treatment, the disease killed babies within two years. Emma will likely receive a second new treatment once the Food and Drug Administration approves it for her age.

At $2.1 million per treatment, it is the most expensive drug in the world and has spurred national headlines.

Their story also demonstrates systemic failures in the medical and pharmaceutical industries. Precious months went by before Emma received her diagnosis. First doctors, then insurance dragged their feet weeks before approving the treatment for which every day matters. The delays brought permanent consequences. Many kids who got the life-saving drug earlier than Emma are supporting their heads, sitting, and talking.

"She's nowhere close to doing that," said her mother Mindy. "She was basically not saved fast enough. Everything's still unknown as far as how much she will progress. But with new treatments on the horizon, we stay hopeful she can grow stronger and have a fulfilling life."

Still, the Wiley family strives for normalcy. This fall, Emma will attend preschool. But as Emma grows so do the costs. The family needs a power wheelchair, renovations to make their suburban Chicago home accessible, and to purchase an accessible van. Costs will quickly exceed $150,000, an extreme hardship for this middle-class family of educators.

The Amazing Emma Benefit will be held from 3 to 8 p.m. Saturday, Aug. 10, at Knights of Columbus Hall, 401 W. Main St., Ottawa, Ill. There will be live music, spaghetti dinner, DJ, dancing, silent auctions, raffles, and kid's activities. Tickets are $15 or $5 for kids.

Or support the family virtually. Visit The Amazing Emma on Facebook. Donate through Venmo (AmazingEmma), PayPal (TheAmazingEmma), or Zelle (TheAmazingEmmaLou@gmail.com).