Today is Rare Disease Day, where all of the orphan diseases come together to raise awareness for Rare Disease. While these individual diseases are quite uncommon, one in ten diseases is actually considered rare! Abby's is one of the rarest, with Cerebrocostomandibular Syndrome only affecting approximately 10 people in the world! But what is Rare Disease for us? Rare disease is a toy zebra hiding among feeding bags, syringes, and cans of Pediasure. It means fighting with insurance to get essential services deemed medically necessary. Being rare means having to become the expert on your daughter's condition, because no one else is. It is feeding pumps, ventilators, pulse oximeters, and oxygen tanks crowding a little girl's room. Rare disease means frequent phone calls to doctors, nurses, case managers, and supply companies. It is scars that tell the story of battles won. Having a rare disease means isolation and loneliness because of the threat of germs....
Choosing joy and trusting God!