"Your daughter is a walking time bomb." We have been told this more times than I like to remember. We have lived every day not knowing if the next breath she takes will be her last.
Her illnesses come so quickly. It's a daily battle of fear, worry, misery, faith and hope. She has been in the hospital more than 100 times. She has suffered one life-threatening infection after another.
We share her story, our story, in hopes of helping others.
We make sure that Mandy knows this is not just her illness.
It's our families' life, our journey. She is not in this alone. It's extremely hard living a life so mysterious that doctors and scientists named her rare disease after her. It's our story about "Mandy's Disease." Read full article »