“We’ve been fighting against time for many years now, and believing is really all we can do.” -Erin, Emily’s mom

Sometimes believing is all you can do—especially when you spend all of your life fighting to stay alive. That’s the mantra Emily Koesters and her family live by. 

Emily was born prematurely and weighed just 2 lbs. 14 oz. At four years old she was also diagnosed with a rare genetic disease called Schimkey Immuno-Osseous Displasia (SIOD). At the time, Emily was one of only four people in the United States who had been diagnosed with this condition. With so few cases, very little research has been done to learn more about the disease. Doctors told Emily’s parents that individuals with SIOD have an average life expectancy of 9 years. Emily will celebrate her 15th birthday this summer. 

“We’ve been fighting against time for many years now, and believing is really all we can do,” said Emily’s mom Erin, Executive Director of the Little Giants Foundation which raises funds to research SIOD. “This disease is not something you get better from, and we feel blessed every time we are able to celebrate another milestone, another success, even just another day with her.”

Emily received her first blood transfusions when she was 4 years old and needed a kidney transplant. Since then, she has also overcome two bouts with cancer, chemotherapy, osteoporosis and broken bones, numerous infections, seizures, and temporary paralysis. She has also had to face her own battles with depression as she tries to understand why she has to endure such a difficult and painful journey. 

“Every time Emily needed blood it was there,” said Erin. “It was like a medicine and I didn’t even think about it not being available. I don’t know if donors understand the impact that it makes, but let me tell you, it’s huge. And I’m so thankful they give their time so we can have more time with our little girl.”