Our Rare Story was Aired on our local news station..
Christina Paul
Since our daughter Hannah has been diagnosed with SCAR-9, an Ultra Rare genetic disorder, and is the only one in the United States living with this Rare disease she has represented National Rare Disease Day on our local news station!
Our daughter Hannah has been diagnosed with SCAR-9, an Ultra Rare genetic disorder, and is the only one in the United States living with this Rare disease, please help spread our story, and help her have a voice! Also visit our blog at http://ezramonet.blogspot.com/