The Mann Family (Asher, Shilo, & Abigail)

When our oldest daughter, Abigail, was nine months old, we were referred to a geneticist for some developmental delays. Because she had been adopted we didn’t know if there were any disorders that may have been inherited. We were shocked that day when the doctor began counting the birthmarks on our daughter. She had indicators of a genetic disorder called neurofibromatosis. She is now 12. She had a tumor removed from her right leg at 2, and has an optic glioma on her left optic nerve that is monitored regularly. She also has asthma that is managed through Riley. 

When we met our second daughter she was four days old and getting ready for her first heart surgery at the University of Kentucky. She has Down syndrome and congenital heart defects. Once all of the paperwork was done and we brought her home, we immediately set up appointments with a specialist at Riley. She spent three months inpatient at 3-1/2 months and had her open heart surgery at that time. We became very familiar with the hospitals, and all of the doctors at that point (as well as the Ronald McDonald House). She is now 9 and has added epilepsy, a g-tube, hard of hearing, and hypothyroidism to her diagnoses. She also uses a wheelchair for mobility.

Our son was born early, and out of state in an emergency situation. When we arrived home, he had some complications and he was taken by ambulance to Riley north. He has since then begun Mehta casting for congenital scoliosis, had surgery to untether his spinal cord and sees multiple specialists as well. He is six and has been diagnosed with VACTERL association.

While we spend more time at Riley than we would like, it’s great to know the doctors and nurses. When one of our kids has something new come up, we can ask for a specific specialist because we’ve likely met someone in that specialty before.