LINCOLN, Neb. (KLKN) – Emily Koester’s family was told she would only live to be 9 years old, but last Wednesday she celebrated her 23rd birthday.
At just 5 years old, Koester was diagnosed with the ultra-rare disease Schimke Immuno-Osseous Dysplasia or SIOD.
With just 10 cases in the U.S., Emily is the only case in Nebraska.
The disease affects 1 in every 1-2 million babies and disrupts multiple systems in the body.
Despite battling symptoms such as seizures, mobility troubles and neurological issues, Emily has consistently beat the odds.
In 2014, her mom Erin, decided to start a foundation in her daughter’s honor.
Because the disease has left Emily small in structure, Erin named her organization the Little Giants Foundation.
The foundation focuses on advocacy and pushes for research on SIOD.
Erin says doctors rely on monitoring Emily to learn more.
“We have so much power within this one child, this one foundation, this one community, this one disease that we can help so many other people with. The advances in research is so astounding,” said Erin.
The family has been in touch with other families around the world, teaching them what they know about the disease.
Erin also gives back to local communities that have helped them, like Domesti-pups in Lincoln.
The nonprofit has been training therapy and service dogs to help people like Emily for more than two decades.
“Truly, training takes about two years, there’s a whole lot that goes into that,” said Merri Hackbarth.
Hackbarth is the board President of Domesti-pups, as well as a trainer and educator for the organization.
The first two years of the dog’s training happens within the Department of Corrections.
Inmates across three Nebraska prisons train the dogs from the time they are puppies.
After that is complete, volunteers take on the task of acclimating the dogs to the rest of the world.
Hamilton, a Goldendoodle, was well prepared when he first met Emily.
Those familiar with the duo, say they had an instant connection.
“He knows her, understands her mood and what to do when she doesn’t feel good,” said Hackbarth.
“Also, when you’re a young adult, you don’t always want Mom and Dad with you all time.”
Hamilton keeps Emily strong, and according to Erin, Emily is, in turn, keeping their family resilient as well.
“She is a little spitfire, we always say she has an old soul, and she loves to do practical jokes. Humor is a big part of our lives, because if you know, you just kind of have to, or it gets too deep, too dark,” said Erin.
Sadly, Emily has recently experienced a turn for the worse and has been in the intensive care unit at UNMC for the past week.
Since both of Emily’s parents are taking turns staying by her side in the hospital, the folks at Domesti-pups have stepped in to help out.
Hackbarth says Hamilton was staying with one of their trainers since Emily was admitted, but as of Thursday he’ll be staying with her.
She says the Koesters are part of the Domesti-pups family.
“After we place the dog, we aren’t going anywhere,” said Hackbarth.
“We try to go to their fundraisers and support them; we truly have an ongoing relationship. We appreciate what they do and we want to support them.”
The Little Giants Foundation has an upcoming golf tournament in October to raise funds for the researchers actively studying SIOD.
If you would like to help the group with their mission, you can check it out here.
If you are interested in becoming a Domesti-pups volunteer or making a financial donation, you can do so here.
department of corrections, Domesti-PUPS, Emily Koester, Erin Koester, ICU, Little Giants Foundation, Merri Hackbarth, neurological disorder, Schimke Immuno Osseous Dysplasia, service dogs, SIOD, Therapy Dogs, UNMC
