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4/11/2017 Latest post:
9 hours ago
Bailey is a 16 year old teenager that is a sophomore at Mt. Zion High School in Mt. Zion Illinois. Bailey has a very rare bone disease called Osteopetrosis. Osteopetrosis is literally a "stone bone" also known as marble bone disease. It is a extremely rare inherited disorder whereby the bones harden becoming denser. Bailey was diagnosed at a very young age due to illnesses, bruise's, and frequent fractures. Bailey seen many specialist and had many tests ran. Bailey tried to be active in sports and dance but just ended up being to dangerous for her that at very young school age she had to stop playing softball and dancing. As a mother I tried to let her live a normal childhood but in reality she could not and has never ice skated, went sledding, roller skating, participate in PE, play contact sports, skiing, and I'm so much more. Bailey has had many surgeries some in which are metal plates and screws in both hips and knees, decompression of optic nerves in both eyes, shunt placed, central lines and port placed, metal plate in skull and had a chiari malformation corrected. At the age of 9 in 2010 I decided after a lot of thinking and meeting with doctors that in hope to better the quality of life we would have a bone marrow transplant at Riley's Children's Hospital in Indianapolis, Indiana. She was in hospital for many months had several complications but held her donor cells for roughly 5 months. She then lived 6 years with no problems. Last year 2016 Bailey's body slowly started shutting down. Her blood counts would not hold up requiring blood transfusions now for over a year every three weeks and Bailey feeling weak and no energy. Doctors after a lot of thinking has decided the best thing for Bailey now is to have a similar transplant but this time a stem cell transplant to be taken placed at the end of April or beginning of May of this year. Bailey will have high dose of chemotherapy and radiation to her entire body before day of transplant roughly 5 to 10 days prior. We will pretty much move to Indy for many months if not a year to due what is best for Bailey and to get her feeling better and back to living life. I have decided to make a caring bridge to update often with what is going on with Bailey. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.