Eight-year-old Emily Koesters stands 41-inches tall and weighs 41-pounds. She goes to school at Gretna Elementary part time and loves it, said Erin Koesters, her mother.
Koesters said the teachers make accommodations for Emily as needed, but Emily loves her teacher and she loves school.
Emily also loves her little sister, Taylor-Jo, who was born on May 19, 2011.
Koesters said Emily is very protective of her little sister. The sisters adore each other.
"She's everything I would have hoped for Emily to be with her," Koesters said.
Yet, Emily needs some more help.
Emily endures one of the rarest forms of dwarfism called Schimke Immuno-osseous Dysplasia. Only four children in the United States and 45 across the world suffer from the medical condition. Many more likely die before diagnosis.
Researchers in Canada recently uncovered a medical breakthrough. They cloned another patient's genes and believe their work with a drug for Muscular Dystrophy can give children with SIOD and other genetic diseases longer lives.
The issue is — $3.5 million is needed to fund the research. And that's where the Little Giants Foundation comes into play.
Friends and family are organizing a local fundraiser for the Little Giants Foundation and everyone in the area communities is invited to attend.
Enjoy music, food and silent auction at the Share Your Heart fundraiser from 6 to 11 p.m. on Saturday, Feb. 11, at the Sarpy County Fairgrounds in Springfield.
Koesters said a majority of the food is being donated by several restaurants, so it will be a buffet of different items to choose from.
"There will be something for everyone," she said.
The band The Godz, playing rock music, will perform from 8 to 10 p.m.
The other ongoing piece of the party is a silent auction. As of last week, 19 items have been collected and include an autographed football by NU players, autographed hat by Coach Bo Pelini, Minnesota Vikings leather football and two Vikings lanterns, artwork and a number of gift certificates.
The top raffle items are a signed guitar by country singer Garth Brooks and a Trisha Yearbook cookbook.
Event tickets purchased in advance cost $20 and can be bought at McKinney's Food Center, Town and Country Floral and from Erin Koesters by calling (402) 658-9624. Tickets at the door cost $25.
One year ago Joe and Erin Koesters were asking for donations to the Little Giants Foundation. The foundation was established by a couple in Oklahoma who had a son, Mitchell Cupps, who was also diagnosed with the disease. It's a foundation for rare dwarfism research.
The Koesters family was introduced to the Oklahoma family in early 2009 by a head researcher out of Canada after Emily's diagnosis was confirmed, Erin Koesters said.
Emily's fight continues. The life expectancy for individuals afflicted by her disease is age 8 to 15.
Dr. Neil Schimke first described Schimke immuno-osseous dysplasia in 1971, according to the Little Giants website. In the ensuing two decades, a few physicians reported other individuals with SIOD.
In the late 1990s, doctors and physicians from around the world combined their efforts to define the clinical course and features of SIOD, identify effective and ineffective empiric therapies and collect DNA samples for genetic studies. Approaches to different treatment continues today. The Schimke researchers are on the brink of a drug that may help believe they prolong lives of SIOD patients.
Koesters said her family became more involved in the foundation when Mitchell died in January 2010.
In addition to fundraising, they celebrated "Nebraska Little Giants Day," which was first proclaimed by Gov. Dave Heineman in 2010 and will be again on Feb. 10, 2012. Koesters said their monetary goal this year is $50,000.
"We just really need this money for the research and the medicine," she said.
Sheila Brummer, event organizer, said money from the silent auction will go to the Koesters family and money from alcohol sales and other fundraisers going on will go to the foundation. Plus, LGF found a match and so that money collected with get doubled.
Koesters said the response in donations has been awesome.
"People are really being as wonderful or more than I thought it would be," she said.
Brummer agreed. She only wishes she could do more because the Koesters are wonderful people with such positive attitudes in their ongoing situation.
"You feel that you are not doing enough," Brummer said.
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