Guilford Co. Baby Born With Rare Muscular Disease

10:39 PM, Apr 13, 2012   |    comments
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Greensboro, NC -- An infant's fight has put life into perspective for his parents and may do so for you after you hear his story. 

For ten weeks, Kathleen and Brian Forbis have looked at their son with so many questions, and at life differently.

"I'm used to helping others out all the time. And now, I'm kind of like, I need the help to figure out what's going to be the best way to treat him and find treatment for him," said Brian Forbis.

Like any new parents, Brian, a firefighter in Guilford County, and Kathleen, who works at a local hospital, were ready for their new baby to come home.

"I had genetic testing and it all came back that he was perfectly normal," said Kathleen Forbis. "We didn't really think anything could be wrong, but it just didn't seem right."

And it wasn't.

"You're supposed to usually hear that cry. And never did hear that. That gave me that feeling that something's going on," said Brian Forbis.

Forbis said when his wife looked over at his face in the delivery room, she knew something was going on.

Logan couldn't breath on his own, or swallow, or move any muscle in his tiny body. It was a scary moment for both of them.

"Me being a firefighter, I wanted to get in there and do something. But I knew they were doing what they needed to do," said Forbis.

After weeks of testing, doctors diagnosed Logan with Myotubular Myopathy, which affects all of his muscles.

"It went from, thought we were having a normal boy, to Myotubular Myopathy, to not sure if he's going to walk, crawl, sit, talk," said Brian Forbis.

As for his Logan's prognosis, there really isn't one.

"Sometimes they don't make it through the first few days of life, but there are some that are 35 years old and walking and talking and are totally normal. So it's frustrating to not know what his life is going to be like. We have no idea," said Kathleen. "It's just a waiting game really. Just take it day by day and hope and pray he's going to be OK from day to day."

Logan has been in the NICU at Children's Hospital in Chapel Hill since he was born. His parents, who have been at his side everyday, call him a blessing.

"A lot of times, we sit down and ask, 'Why us? Why us?' He was sent to us for a reason. There's a plan," said Brian Forbis.

There are only about 300 cases of Myotubular Myopathy in the United States, so doctors still know very little about the disease.

Logan is gaining weight and his condition isn't getting any worse, but it might not get better either. He can only lay on his stomach or his side, not his back because he can't swallow on his own and he has no control over his tongue, which is a muscle.

The Forbis' had hoped to bring him home Monday, but Logan still needs so much medical attention they might have to wait a little longer.

"I can't wait just to hear him cry," said Kathleen Forbis.

Brian and Kathleen Forbis have not been back to work since Logan was born. Their coworkers have been covering their shifts and donating vacation days so they can stay with their baby.

The Alamance community fire department is holding a spaghetti dinner fundraiser for Logan. It will be held at Alamance Presbyterian Church-Brown Hall on May 5, 2012 from 4 p.m. to 8 p.m.

Logan's parents have also set up a fund for him. To donate, you can call 336-697-0572 or mail a check made out to Logan Forbis to this address:

Alamance Community Fire Department
4108 Presbyterian Road
Greensboro, NC 27406

 

WFMY News 2

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