This is our little fighter Miranda. She is the rarest of the rare. One of only 100 people diagnosed in the United States with the rare Koolen-De Vries syndrome.
We started with Akron Children’s Maternal Fetal Medicine and have spent more time here at Akron Children’s Hospital in this lady’s first year of life than we have at home.
Akron Children’s literally is our home away from home. She has at least 15 specialists, including PT, OT, and feeding and speech therapy. She had open heart surgery at 2 months old as well as two other surgeries so far. She continues to defy the odds, but could not do it without our family here at Akron Children’s.
Our therapists are not only our therapists, but our friends. We could not make it without the love and compassion from Della and the volunteers at the Reinberger Family Center. They are always there with a reassuring hug and smile after a rough day. They always know Miranda by name and love her so much.
Akron Children’s saved our baby’s life and continues to do so on a daily basis. Not being able to eat, we embrace all things G-tube related, so in her first birthday pictures we wanted to show the love to the feeding tube community and the world. Here’s to Miranda’s incredible first birthday picture!