Sweet Kylie has been diasgnosed with a rare auto immune disorder. McCune-Albright Syndrome. A once active and happy child has suddenly turned into a child who cannot function. My insurance is battling us on every..single item. Continues blood sensor monitors.. hospital,bills. Medication.. you name it. We’ve fought it. We already lost her father, my husband to AML in 2016 and now we are facing a strange new illness. A just entered 6th grader got dizzy at school one day and her blood iron was in blood transfusion levels and her body started burning glucose to compensate. Since that time 2 months ago she’s barely been able to make it more than 2 days at school each week. As a single mom.. the constant fight with United health care and the battles with Caremark have gotten to the point that her dexcom and such have become out of pocket. I haven’t been able to work and she hasn’t been able to attend normal school. Just looking for help to get appropriate answers for her. Help pay to continue her care (Asher blood sugar drops with no notice) and try and make her life as normal as possible, Kylie needs additional therapy as this has taken a MONSTER a hit on her self esteem. Kids are so mean… if you have a little to share.. we welcome the love.. and promise to pay it forward.
its amazing how quickly life can take changes. We were cursing right along in life and doing very well.. then our world collapsed in 2016 with AML and now this. 11 years old should be worrying about what kind of shoes to ask mom to buy..