This is Emily …
Emily Koester is a beautiful 6 year old girl that has a very rare disease. She is one of 4 people in the US that has Schimke Immuno-osseous Dysplasia (SIOD), one of the rarest forms of Dwarfism. Only 45 people world-wide have this disease. This disease is very rare. Only 1 in 1 million to 3 million get this genetic disease. She will have a shortened life span with: stroke, hip replacements, kidney failure and infections as some of the problems with this disease. This disease is detected by growth, appearance, illness and x-rays. Emily has rounding of the spinal vertebrae, classic characteristics of hip dysplasia in the pelvis and thighs. Emily experienced kidney failure in spring 2008 and received a kidney transplant from her father Joe. A side effect of the transplant, the anti-rejection medication caused Lymphoma, Emily’s is in stage 3 and has endured chemo. Recently a fungal infection was discovered in the donated kidney, so she has been on anti-fungal medication. She has suffered from constant fevers, vomiting, headaches and most recently seizures. She has had over 37+ surgeries in the past 2 years.
Emily was able to go to Kindergarten for one day at the beginning of the school year, then she got sick again and returned to the hospital. Pete, a classmate, goes door to door selling his mom’s brownies and other garden goodies to help raise money for Emily. Watch the video HERE.
While Emily has been in the hospital, she has raised and donated money to Save the Cheetah foundation and Pennies for Polar Bears, (donated to the Henry P. Doorly Zoo in Omaha). This little girl has a heart of gold. I think it would be wonderful if we were able to shower her with cards and stickers to help raise her spirits.
The family includes:
- Emily, age 6
- Mom – Erin
- Dad – Joe
For information on sending cards to Emily and her family, click HERE.