Happy rare disease day. Do you know how many people are struggling with a rare disease? One in ten and hardly any one gets a diagnosis. That means no known therapy. We traveled the county and talked to leaders in the genetic field looking for a diagnosis for our girl and eventually found one through good old googling and facebook. We were the lucky ones. Most people go their whole lives never knowing and knowing was half the battle for our family. Having this rare girl was the greatest honor and biggest blessing in my life and I will miss her every second of every day. This picture was taken when she was still able to pop her little head up off my shoulder and give me big kisses, a skill that would eventually leave her in later years. I wish that i could have done something more for my girl. I pray that more funding and research is done so that no family will ever have to watch their child suffer, deteriorate and eventually leave them.
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