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Emily Koesters

Gretna, Nebraska

My Story

How old was your child when they were diagnosed with SIOD?: 

Emily was diagnosed with SIOD when she was 4.5 years old. 


What were your thoughts when you FIRST learned that your child was diagnosed with SIOD?: 

When Emily was diagnosed nearly twelve years ago, it was pretty lonely. There was one other parent we were close to and got to meet when they came from Oklahoma to Nebraska for medical care. I began researching and advocating right away! Emily had a kidney transplant from her dad and was in her second battle of lymphoma by the time she received her diagnosis of SIOD.


Tell us briefly about the medical complications that have occurred because of SIOD: 

There is no concise way to describe Emily's medical complications from SIOD. She has pretty much been through every single challenge and difficulty with this disease and survived! 

Emily has had the following: 

  • A kidney transplant from her dad (11 years ago )

  • Lymphoma cancer- twice

  • Double hip reconstruction surgery

  • Debilitating seizures

  • Fungal infections

  • Many types of therapies

  • Blood transfusions 

Emily has had 55 surgeries to date.

What has your child's treatment plan look like?: 

Emily's treatment plan is ongoing, and she is treated by over 13 specialists from coast to coast. She does aqua therapy, horse therapy, Speech, 0T, PT, and has IVIG treatments every three weeks and pamidronate every 3 to 4 months and lots and lots of follow-ups with doctors. Emily has had workups for stem cell transplant twice, but this is before the work at Stanford. Even though that treatment is available, she has already had a kidney transplant. Alongside the stem cell team, we are trying to decide if and when the right time is for her.

What challenges does your family face because of SIOD?: 

We continue to meet so many problems in a multitude of ways. Financially and mentally wrapping our brains around this disease each year that passes. We remain hopeful, and we still believe between our two foundations and the work at Stanford that we will find a cure to SIOD. 

Give us some information about your SIOD patient (hobbies, favorite color, their personality) : 

Emily's favorite color is pink and rainbow. She's a lover of all things nature, especially animals and the cheetah. She has a deep special bond with Mother Mary and continues to feel blessed despite the many obstacles she faces. Emily is a true warrior princess that loves country music and has the voice of an angel.

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