Our Story

The Little Giants Foundation Executive Director and Mom of Emily, Erin Koesters works with families, doctors and researchers around the world to help educate, raise awareness and funding for SIOD.

Emily is one of ten diagnosed in the United States and one of 50 in the world with SIOD. She is proportionate and stands 41 inches tall at 20 years of age. It’s believed that many more children may have Schimke but the journey to a diagnosis can take years and most lose their battle from the symptoms of kidney failure, infection, or stroke before they’ve been accurately diagnosed.

Research has been going on for Emily’s disease for well over a decade and long story short moved to the states from Canada in January of 2017 to Stanford Children’s Health/ Lucile Packard Children’s Hospital. The Little Giants Foundation is in contact with the researching doctor in Immunology, Dr. David Lewis. Emily and her mom, Erin, went there on January 22, 2018 to begin the evaluation and treatment for SIOD. This is the hope, the belief, the one thing the Koesters have been fighting for- a possibility to prolong Emily’s life, to begin to get not only an understanding of this disease, but to help others now and in the future learn about SIOD from Emily.

Joe, Emily’s dad, and Erin will do anything to ensure Emily’s quality of life stays high for as long as they can, so her younger sister, Taylor-Jo may continue to love on her sissy. Joe and Erin took over the Little Giants Foundation in August of 2014 to ensure that monies continue to be raised and given to the head researcher, Dr. David Lewis for SIOD at Stanford. Dr. Lewis was in contact with the original lab where the Koesters started this endeavor in Canada with Dr. Neal Boerkoel. $6 million is the lucky number to try a ground-breaking medicine out on Emily to help prolong her life. ($25,000 a month is needed to keep the lab operational equaling $300,000 a year) Time is running out!

Emily has already surpassed the life expectancy of nine and now it is all a waiting game. With each passing child over the years Joe and Erin ask why? Why is it that Emily seems to have been the most sick for the longest time, yet still lives on? Why are the Koesters so blessed to have another year? We won't know, but know that the family takes each moment they get and lives life to its fullest as they continually raise the bar for Emily's quality of life. And that is why Joe and Erin revived The Little Giants Foundation, brought it to Nebraska on a national level campaign to bring about awareness, education and fundraising so that Emily, their Little Giant and Little Giants to come may live longer lives.

Read more about Emily and her family’s journey in this Cosmopolitan article from 2017.
https://www.cosmopolitan.com/politics/a10364729/emily-koesters-medicaid-obamacare-repeal/