Gretna's Emily Koesters is not simply one in a million, she's one in roughly 79-million.
Emily, 9, suffers from Schimke Immuno-Osseous Dysplasia, an extremely rare form of dwarfism that affects only four of the United States' more than 315 million citizens.
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 currently undergoing physical therapy on her legs due to osteoporosis — a condition that increases the risk of bone fractures.
While there is no cure, the Koesters and the Little Giants Foundation — an Oklahoma based foundation set to raise research funds — are hosting a fundraiser at the Sarpy County Fairgrounds, 100 Main Street in Springfield, on Feb. 16 to help develop treatment.
“This money for research may develop a drug to prolong (Emily's) life,” Koesters said.
She said that so far the research is in the very, very early stages of the process.
“It will take all $3 million to get to the stage to test on her,” Koesters said. “So we're a long way away.”
Last year's event raised more than $15,000 with more than 200 guests attending the event, and Koesters said that more than $100,000 has been raised in total, not including additional funds from matching grants.
“There's so many things going on in the world today,” Koesters said, “so it's important for us to help each other.”
She said that part of it being such a rare condition is that many do not know about it, which in turn makes it less likely to be diagnosed when it does happen. She said that the more attention SIOD receives, the more likely doctors may start to recognize the symptoms and diagnose the condition before it is too late.
Additionally, Koesters said she wants to encourage everyone to come to the event to help raise the much needed funds.
“The big diseases out there are well worth it,” she said.
She said she does appreciate the large fundraising for conditions such as cancer, having battled it twice with Emily. She does not, however, want people to forget the rare conditions.
“Try and help the little guy out,” she said.
Koesters said that the fundraiser will have plenty of food, music by The Godz, a silent auction and a raffle, which includes a chance to win a 46-inch flat screen television.
Additionally, there will be a craft area and dance floor open to the kids. Koesters said that dancing was a big hit for the children last year.
Tickets cost $20 in advance or $25 at the door, with doors open from 6 p.m. to 11 p.m. For ticket information call 402-658-9624.
For additional information on Little Giants go online to littlegiantsfoundation.org or visit the Help Emily Koesters page on Facebook.