I’ve had so much support and visitors following Hannah’s story, that I felt it would be important to share the struggles and stories of other parents with children with rare diseases that most of you have not heard of. So every Friday, I’m going to highlight another special child like Hannah.
Josslyn has been diagnosed with is called Autoimmune Lymphofroliferative Syndrome (ALPS). Basically, she has anti-bodies that are killing all of her good blood cells instead of killing infections. Josslyn has been admitted many times because her body doesn’t fight infections very well.
Josslyn’s mom has to weigh Josslyn at home tomorrow morning. If she loses any more weight she has to be admitted to the hospital, get her feeding tube placed again, and be under close observation there until Monday, then she will be transferred to Childrens to be admitted so her GI team can look at her.
Please visit Lindsey and Josslyn at http://www.caringbridge.org/visit/josslynfrost.
I added your button to my blog (hope you don’t mind). I really admire you, and I pray that little Hannah lives a long and productive life. Thank you for sharing her story, and I think you’re doing a wonderful job of getting the word out about this disease. Stay strong and remember to Trust!