Warner Robins Family Shows Incredible Strength Through Hardship Of Son’s Incurable Disease

WARNER ROBINS, Georgia (41NBC/WMGT) – Every once in a while a story comes along, the kind where as a reporter, you aren’t exactly sure what direction the story will go. A couple weeks ago I received an email from a viewer, asking if there was anything I could do to help the Holter family in Warner Robins. When I read through the email, I agreed that, yes, I would go and put a story together to help raise awareness for this family’s cause. I didn’t know I would meet a young mother who is facing something no parent should ever have to face. And she is doing it with incredible strength.

When you look into the eyes of an infant, all you should see is life and laughter. Wyatt’s eyes, are no different. The five month old is full of life. His eyes watch every movement around him. His talking sounds just like that of any other five month old.

“I think he was like five weeks old when we noticed he wasn’t moving much anymore,” Katie Holter recalls.

The changes were subtle in Wyatt, but Katie and her husband Josh noticed them almost immediately.

“He used to kick when I tried to change his diaper, then he just wasn’t moving his legs anymore. At first I thought I was just getting really good at changing his diaper!”

But Wyatt wasn’t moving at all. His hands and feet began to contract, seemingly uncontrollably, and his body wouldn’t move as a baby’s should.

After a doctor’s visit, the Holters learned their firstborn baby boy, had a rare disease called Spinal Muscular Atrophy. In Wyatt’s case, SMA-1. It’s a condition that affects the muscles in his body, where the neurons die off, muscles no longer work, and the body is no longer able to move.

“To read statistically, your child will die before they see their second birthday…it’s just devastating,” Katie said fighting the urge to cry. “It just, kind of makes you sick to your stomach, the wind is knocked out of you, and there’s nothing that…you’re not going to have your baby anymore. Your baby is going to be taken from you.”

An incurable disease, one that doctors can do nothing for.

Katie explains it like running up 10 flights of stairs, and then being asked to do it all again. That’s the exhaustion Wyatt faces every day simply trying to breathe. Or think about it this way; When you sit in one spot for several hours, you get sore or stiff. That’s what Wyatt feels, except he doesn’t have the strength to reposition himself, to stretch, or even to roll over to get comfortable while he’s sleeping.

Every day is a chore for the Holters. With his muscles deteriorating, Wyatt can’t swallow, so he’s fed through a tube. He uses a device that mimics a cough because his lungs aren’t strong enough. He requires breathing treatments and help. Oxygen is on standby in the house in case of an emergency, and he can’t be around people who are sick. And what’s even worse, only 10% of children born with SMA live to see their second birthday.

“I have great hope that he’ll be here longer than two years. That’s not me being naive, I know 100% the statistics. I know what can happen, what very well could happen. But I feel like if I’m not hopeful and just say, ‘That’s that,’ he’s not going to be here any longer. He will be gone before that two years.”

The friends and family of the Holters are sponsoring a 5k Fun Run this Saturday, January 5th in Warner Robins. The race will be a fundraiser for the family, who is facing incredible medical bills, and will also go to help support research for SMA.

To get more information about SMA, the Holters, and the 5k race this weekend, click here.