March 21, 2012 at 8:00 AM ET
Two years ago Aaron and Debbie Knobloch learned that their baby daughter Alida was suffering from a rare lung disease and that she would need a portable oxygen tank to help her breathe. The good news was that the oxygen tank would make their little girl healthy. The bad news was that she’d have to be tethered to the 6-pound tank most of the time.
The Knoblochs struggled to find a way to give Alida a normal life. Aaron built a walker with a pocket for the oxygen tank so she wouldn’t always have to be tied to one of her parents. But as the little girl grew older – and more mobile – the walker wasn’t enough.
When Aaron saw a TV program about service dogs, he knew he had the answer: with a dog carrying her oxygen tank, little Alida would be free to roam and play with other kids. Enter Mr. Gibbs, a golden doodle trained to be Alida’s constant companion, ever at her side whether it’s scampering down the slide at the playground or trotting alongside as she rides her bike.
"He's been a great addition to the family and just awesome help for her," Aaron told TODAY's Matt Lauer. Next to him, 3-year-old Alida giggled as she alternated between wrestling and cuddling Mr. Gibbs, who patiently rested his head on her lap.
It hasn’t been an easy journey for the Knoblochs.
Though she was a little premature, Alida initially seemed healthy. But by the time she was 6 months old, the little girl started having breathing problems. Sometimes her heart would start racing for no apparent reason. Other times she seemed to be breathing too fast. Then one day she turned blue and the Knoblochs rushed her to the hospital. Though she was quickly stabilized, doctors couldn't explain what was happening to Alida.
Aaron and Debbie went from doctor to doctor searching for answers. The relief was palpable when a specialist finally figured out what was wrong: 8-month-old Alida was suffering from a rare lung condition called neuroendocrine cell hyperplasia of infancy, or NEHI, that made it hard for her body to get enough oxygen from the air she breathed.
The condition was discovered just seven years ago, and there have only been 500 confirmed cases, according to the Children’s Interstitial and Diffuse Lung Disease Foundation (chILD).
So far, nobody has figured out exactly what causes the children’s labored breathing, says NEHI specialist Dr. Megan Dishop, a pediatric pathologist at the Children’s Hospital Colorado and an associate professor of pathology at the University of Colorado School of Medicine. Researchers just know that there is an overabundance of neuroendocrine cells in children with NEHI. It’s possible that when there are too many of these cells, there’s a breakdown in communication in the airways, resulting in too little oxygen getting into the bloodstream, Dishop says.
While the Knoblochs were happy they finally had a diagnosis, they quickly recognized that it would change their lives.
“After we were told how rare it was and that there wasn't a lot of information available there were about a million more questions,” Aaron told TODAY.com. “How does she get her oxygen? How do we make sure she is getting enough? Where to do we get it from? Will she be able to play with other kids? How is a baby going to grow up having to be tied to an oxygen bottle? Will she ever be able to play sports, or just go play outside? And that was just the first second.”
Getting oxygen was the easy part, it turned out. With the help of a small portable oxygen tank, Alida was able to return to good health. The tough part for the Knoblochs was figuring out how they could give their little girl a normal life – until they found Mr. Gibbs.
The dog was living with Ashleigh Kinsleigh, who trains service dogs near the Knobloch's home in Loganville, Ga. The puppy had finished up his initial obedience training when the Knoblochs came for their first visit.
Alida hit it off with the shaggy puppy right away.
“They weren’t sure they wanted to go with a golden doodle,” Kinsleigh told TODAY.com. “But she went crazy for him.”
So Kinsleigh began the specialized training a dog would need to take care of an especially young charge.
“He had to learn to get under the table at restaurants,” she says. “He had to learn that if there were other animals he couldn’t just go and play with them. He had to stay right next to his girl and ignore all the fun things around him. He also had to build up to be able to carry around the full weight of the 6 pound tank.”
Kinsleigh calls Mr. Gibbs “a work in progress” because he’s still learning to be a little girl’s constant companion. “His job is to go wherever she goes and do whatever she does,” Kinsleigh explains. “If she wants to get on the bike and go down the driveway he has to learn to run alongside. If she’s going to ride on a slide, he has to learn to climb up and slide down behind her.”
Most service dogs don't work with children younger than 5. Teaching Mr. Gibbs to pay attention to a 3-year-old has been a challenge.
Aaron Knobloch told Lauer. “This hasn’t been done with a child this young. He does really well with Debbie and I, but it’s tough for him to listen to a 3-year-old.”
Little Alida gets her share of training, too.
“She actually gets frustrated when he doesn’t listen,” Aaron said. “That’s what we’re working on right now – helping him understand that that is the command. And she doesn’t always speak real clearly, so it’s been tough for him.”
The Knoblochs hope that by the time Alida’s ready to start school, everything will be running smoothly.
“That’s why we’re doing this so early,” Aaron told Lauer. “We’re hoping by the time she gets to kindergarten it will all be figured out and there won’t be any training left to be done and they’ll just go to school.”
Mr. Gibbs may not always have to carry around Alida’s oxygen tank.
Experts say that children seem to “grow out of” NEHI – or at least the need to breath with the help of an oxygen tank. “The general thinking is that these children will only have mild residual disease long term,” Dishop says.
Maybe one day Gibbs' only job description will be: girl’s best friend.
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Linda Carroll is a regular contributor to msnbc.com and TODAY.com. She is co-author of the new book "The Concussion Crisis: Anatomy of a Silent Epidemic”