Couple Brings Awareness to Son's Muscle Disease

Before Leo even turned a month old, he was already a fighter. He's been living with Spinal Muscular Atrophy, a terminal genetic disease.

He has changed us so much," said Meredith Bugenske, his mother.

Meredith and her husband, Adam, had an easy nine months waiting for their baby boy.

"I had an awesome pregnancy all the stuff people say – pain, not resting, all that stuff I just didn't have any problems. It was amazing," she said.

But toward the end of the pregnancy when babies normally are kicking and cramped for space, Meredith said she barely felt him.

"He would have just kind of flutters here and there," Meredith said.

Just two weeks after Leo was born, the Bugenskes noticed he wasn't moving much.

"Worst case scenario he just might not be able to do things like other children could do and when we started researching Spinal Muscular Atrophy (SMA) it's a terminal disease," she said.

It affects the muscles, leaving Leo on his side most of the day. Meredith can barely hold him in her arms.

"The other day for almost ten minutes and I had not done that in a really long time, so again it kind of just depends, that's a pretty rare situation that he can tolerate it for that long," she said.

You'll find their positive attitude in their daily Facebook posts. They hope it will spread awareness about Leo and this deadly genetic disease.

At nine months, he's even become recognizable.

"We were at the zoo and a family came up to Adam and they said, 'Is that Leo,' and, 'Yeah that's Leo,' and they said, 'Oh ,we follow his page and we've been praying for y'all,'" Meredith said.

With run-ins like that, kind words and lots of prayer, the Bugenskes say there's a lot to look forward to.

"When you're with him it's hard to be doom and gloom because he's such a fighter and such an amazing little boy," she said.

The family is holding a 5K for their son called "Go Leo Go." It's raising money for Leo's medical equipment and expenses as well as SMA research. You can find more information at the 5K's website. You can also follow's baby Leo's journey on Facebook by searching "Leo's Pride" or clicking here.


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