Mindee Vance will celebrate what would have been her daughter's first birthday by raising awareness of the disease that took Katie Mae Vance when she was 159 days old.

Mindee Vance will celebrate what would have been her daughter's first birthday by raising awareness of the disease that took Katie Mae Vance when she was 159 days old.

The Know SMA 5K and Katie Mae birthday walk will be held at Glacier Ridge Metro Park on Sunday, Nov. 15 -- a few days before what would have been Katie's first birthday.

Vance said she was "blindsided" by the disease that took her youngest daughter.

"I had the perfect birth, the perfect baby, prenatal care," she said. "Six weeks later she stopped moving."

Vance and her husband, Chip, had no reason to suspect their baby could have spinal muscular atrophy, or SMA. Their daughter Lilly, now 2, had no problems.

When Vance took Katie to the doctors and then the hospital, the doctor called SMA the "worst case scenario."

"At six weeks we found out about SMA," Vance said. "We found out our newborn baby wouldn't live past her second birthday."

According to figthsma.org, SMA causes muscle weakness that eventually causes the loss of the ability to swallow and breathe. There is no cure or treatment for SMA, which kills more babies than any other genetic disease.

Katie died April 27. As her first birthday approaches, Vance said organizing the 5K is keeping her mind occupied.

However, her main goal is to raise awareness.

"It's a devastating baby killer that people just don't talk about. It's overwhelming. I cry every day. I miss her every day, but life goes on," Vance said. "I don't want this to be about Katie. I want this to be about SMA."

Vance said both she and her husband are carriers of SMA and didn't know, although testing can identify it.

"When you have your baby you start planning in the back of your mind. You start planning trips to Disney World. Lilly just learned to bike; I was thinking about Katie learning to ride," Vance said. "Those are the things that we lost. We lost the future. It's a devastating illness and it affects a lot of people. Two babies a day are born with SMA on average in the U.S.A. I feel like people need to know about this."

Vance wants to encourage parents to get tested and learn about the disease, so they aren't shocked if it happens to one of their kids.

"If you know about it you can prepare yourself for it. If you don't know about it, you get hit in the face with it," she said. "I just can't live with that and not scream as loud as I can about it."

In order to increase awareness, Vance also created a Web site, knowSMA.org, about six weeks ago.

"The mission of Know SMA is to tell people so it doesn't happen to anyone else," she said. "Basically, I want to raise money so I can run an ad campaign. I want people to recognize SMA."

Registration for the Know SMA 5K begins at 9 a.m. Nov. 15. The 5K begins at 10 a.m. and walk at 10:05. Registration for the 5K is $25 online or $30 on race day. The walk is $10 online or $15 on Nov. 15.

For more information on the 5K, look online at knowsma.org or premierraces.com/2009Races/ SMA.html.

jnoblit@thisweeknews.com