Gretna’s Emily Koesters is not simply one in a million, she’s one in roughly 79 million. The 9-year-old suffers from Schimke immuno-osseous dysplasia, a form of dwarfism that affects only four of the more than 315 million people in the United States.
SIOD is characterized by short stature, kidney disease, cancer, stroke and a compromised immune system, among other symptoms.
“There is no cure for this disease,” said Erin Koesters, Emily’s mother.
So far Emily has battled cancer twice, received a kidney transplant from her father, and is doing physical therapy on her legs due to osteoporosis, which increases the risk of bone fractures.
To support development for a treatment for Emily’s disease, the Koesters and the Little Giants Foundation — an Oklahoma-based group that raises research funds for rare forms of dwarfism — will host a Saturday fundraiser at the Sarpy County Fairgrounds, 100 Main St. in Springfield.
Koesters said it will take at least $3 million to bring research to the point that it can be tested on Emily.
Last year’s event raised more than $15,000. More than $100,000 has been raised in total, not including additional funds from matching grants, Koesters said.
The 6 p.m. to 11 p.m. fundraiser will include food, music by the Godz, a silent auction, a raffle, a craft area and dance floor open to the kids, she said. Dancing was a big hit for the children last year, Koesters said.
Tickets are $20 in advance or $25 at the door. For tickets, call 402-658-9624.
For more information on Little Giants, visit the Help Emily Koesters page on Facebook.