Meet Riley

Child's Diagnosis: Pulmonary Hypertension

Has Kerrington’s Heart impacted your journey? If so, how?: Kerrington's Heart has allowed us to meet other families that deal with heart issues on a daily basis. It can be a lonely time when others don't understand the trials you go through as a heart family. Kerrington's Heart has been amazing and very welcoming to us.

What’s one thing you wish you’d been told at the beginning of your journey?: I wish we had been told about groups like Kerrington's Heart.

What’s one word you would use to describe your journey and why?: Whirlwind... There have been so many ups and downs with our journey and it was so unexpected as most people would agree. I feel very blessed to finally be where we are now.

Please share a little bit about your story:: Riley was always a healthy child or so we though except for the normal sickness that most kids get. She did tend to deal with run of the mill viruses a little harder than other kids her age. Riley was diagnosed at age 4 because she was becoming out of breath with activity. After an echo, we were referred to Cincinnati Children's to see a Pulmonary Hypertension specialist. It was terrifying. Riley's PH causes the right ventricle to of the heart to dilate. This can cause heart failure. Due to the pressures in her heart, she endures 24/7 IV medication but doesn't let any of it get her down. She has also been through many procedures and heart catheterizations and will continue to have to go through these for the rest of her life. She is now 7 years old and she is absolutely my hero. It's amazing to see how resilient a child can be. She inspires me to keep going every day and to give back to others.

Meet Evan

Child's Diagnosis: Tetralogy of Fallot

Has Kerrington’s Heart impacted your journey? If so, how?: They have given me love and friendship and support from a shoulder to cry on, an ear to listen, or money for the vending machines.

What’s one thing you wish you’d been told at the beginning of your journey?: That it's OK to fall apart.

What’s one word you would use to describe your journey and why?: Educational. I have learned so much, from medical terminology to who I am as a mother/wife, about love and faith, hope and fear. It has been an eye opening journey.

Please share a little bit about your story:: We found out at 24 weeks Evan had TOF. He was born at 36 weeks by c-section. He was blue and cried out a few times before he stopped breathing. He was taken from Central Baptist NICU to UK Children's Hospital PICU. The next day, he had his first heart surgery to place a shunt to get more blood flow to his lungs.

The bottom of his incision became infected with MRSA, and we had a long fight as well as 2 more surgeries to heal it.

He had trouble gaining weight. At 7 months, he was only 10 lbs. I learned to place a NG tube so he could be fed overnight as well as putting what he did not finish from his bottle.
He had ear tubes due to multiple ear infections. At 1 year old, he had his heart repair and rocked it! He went home on day 5!

Today, he is a happy boy! He had 3 teeth extracted and will need to have surgery on his right ear in a few years due to the hole from the ear tubes not closing. He is a little small for his age but is a typical 6 year old boy.