Alida Klobauch was just 6 months old when her parents, Debbie and Aaron realized something was wrong with their baby girl.
"Sometimes her heart would start racing for no apparent reason. Other times she seemed to be breathing too fast," reported MSNBC
. 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."
What is NEHI?
After multiple hospital stays and tests, doctors determined that Alida had a rare lung condition called neuroendocrine cell hyperplasia of infancy, or NEHI, that robbed her of the air she breathed.
According to the Children’s Interstitial and Diffuse Lung Disease Foundation (chILD
NEHI is a disorder of the lungs in children and is classified within the group of children’s interstitial lung diseases (chILD). Children's Interstitial Lung Disease (ChILD) is not a single disease. Instead, it is a group of rare lung diseases found in infants, children, and adolescents.
There are different types of chILD that vary in their severity and in their long term outcomes. In simplest terms, all types of chILD decrease a child’s ability to supply oxygen to their body.
“As any parent will tell you seeing your child sick and not knowing exactly why or how to fix it is the most helpless feeling imaginable,” the Knoblochs wrote online
The Knoblochs would soon find out that their story wasn't uncommon. Dr. Lisa R. Young, MD, an instructor of pediatrics and medicine in the division of pulmonary medicine at Cincinnati Children's Hospital Medical Center in a discussion
about NEHI said "because the symptoms of chILD overlap those of many more common pulmonary disorders. Often, it is only the failure to respond to other treatments, or the chronicity of the patient's symptoms, which gives the clues to chILD as opposed to some more common cause of respiratory symptoms."
While Aaron and Debbie were relieved to have a diagnosis for their little girl, "what isn’t a relief is then finding out that your child’s condition is so rare, there are only a hand full of doctors that know anything about it and less than 1000 people in the entire U.S. and possibly the world that have the condition,” the family wrote online.
This disorder is relatively rare and was classified and described in 2005.
Once the NEHI diagnosis was made, doctors told the Knoblauchs two things: Move from Utah and live in a lower elevation and Alida would need to be on oxygen continuously to stay alive.
“When we lived in Utah, the altitude made it harder for her to breathe,” Knobloch told National Correspondent Amy Robach in their Today show
interview. "She was already falling behind on her milestones. She didn't sit up until she was eight months old. But as soon as she got on the oxygen she started catching up quickly."
One of the things Alida seemed to catch right up on was her mobility - or her desire to get around. But how does a child whose lungs make it difficult for her to breathe, a child who is just learning how to walk, carry an oxygen tank that weighs 10lbs?
"You know, when she crawled it wasn't a big deal because she couldn't get that far away. When she started walking we had to come up with something different," Aaron told Today's Robach.
Aaron and Debbie longed for Alida to experience the sense of freedom that comes with being a child so "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," MSNBC.com reported.
"We saw a show on TV about service dogs , and that's when it clicked. I don't need a cart for her, I need a bottle that's going to follow her," Aaron said.
Aaron and Debbie began to look into acquiring a service dog which would allow her to play with other kids by carrying her oxygen tank.
But this solution, at least initially, proved difficult to accomplish. "Most service dog agencies won't talk to you until your child is older, 5 or 7." Aaron told Today's Matt Lauer.
That was until they met Loganville trainer Ashleigh Kinsley owner of Georgia K9 Academy. Kinsley not only talked with the Knoblochs, but was able to provide them with Mr. Gibbs and training for three year old Alida.
"I feel very blessed and fortunate to be apart of a dog doing such an amazing wonderful things for a child," Kinsley wrote on her company blog
Kinsley remembers the first time the Knobloch family met Mr. Gibbs. “They weren’t sure they wanted to go with a golden doodle,” Kinsley told TODAY.com.
But Alida was sure.
“She went crazy for him,” Kinsley said.
Training will take time and patience as "we just got him a couple of weeks ago,” Knobloch told the Walton Tribune
According to Ayers Pampered Pets
, where Mr.Gibbs was born, he's up for the task.
The Goldendoodle is a loving, loyal dog and has a keen sense of smell. Goldendoodles are intelligent, friendly, and great with kids, just like their Golden Retriever and Standard Poodle parents. They are easily trained, highly social, and by nature are easy with strangers and other dogs. They love to play, and commonly retain the strong retrieving instincts of the Golden Retriever.
Our puppies grow up continuously socialized with other pets and people.
Many of our puppies have grown up to work as service dogs with the elderly, children, and people with disabilities.
To carry Alida's oxygen tanks, Mr. Gibbs wears a red service animal vest, which has pockets on either side for small oxygen tanks.
“He had to learn to get under the table at restaurants,” Trainer Kinsley told the Today show. “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.”
Kinsley 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,” Kinsley 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.”
It's something he's happy to do, Kinsley says.
"Dogs give themselves selflessly, unconditionally and all they ask for in return is a snuggle, some belly rubs and a good meal :o)," Kinsley writes on her company blog
. "Gibbs is lucky to have such a great girl to grow with."
With Alida, the feeling is mutual.
She said as much towards the end of the Today show
segment filmed at her home.
"Who's your best friend?" asked National Correspondent Amy Robach.
"Gibbs," Alida says.
Alida, NEHI, and the future
Since NEHI has only been recently recognized there's limited information on the long-term prognosis for children with the disease.
But there is good news. With the limited information they do have, experts
say that no pulmonary-related deaths have been associated with NEHI, suggesting that prognosis for children with NEHI is generally good, Medscape.com reported.
As the Tribune mentioned, since Alida's lungs are still in development, the hope is that she will eventually have more healthy lung tissue than diseased.
Most "NEHI patients decrease their need for oxygen over time and most eventually grow out of the need for supplementation," according to the Children’s Interstitial and Diffuse Lung Disease Foundation (chILD).
If you are looking for more information about neuroendocrine cell hyperplasia of infancy, or NEHI, go to www.child-foundation.com