This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy (cDM1). She spent 105 days in the neonatal ICU, 9 months on a ventilator with a tracheostomy and using a feeding tube. Her doctors did not expect her to live to see her first birthday but she lived 13 years and 8 months filled with amazing adventures. She loved defying the odds with love and care from her family, friends, therapists, teachers, and medical team. This is her story...