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Evelyn, age 2

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Child's Diagnosis: Shone's Complex

Has Kerrington’s Heart impacted your journey? If so, how?

Kerrington's Heart provided financial assistance when we first found out about Evie's diagnosis and sent us care packages while we were in the hospital. More importantly, though, they provided emotional support and helped us feel less alone. From Heart Mom Meetings to fun events to phone calls to educational opportunities, Kerrington's Heart has been by our side every step of the way. I can't emphasize enough how much this organization has done and continues to do for us and families like ours or how much this group of volunteers, parents, children, and family has come to mean to us. They have become family.

What’s one thing you wish you’d been told at the beginning of your journey?

I wish I'd been told to speak up while in the hospital: to ask questions, insist on answers, and if I don't understand something, make them explain it to me in a way I can understand.

What’s one word you would use to describe your journey and why?

Surprising. You can never really prepare yourself for how difficult the journey will be, but it is also surprisingly beautiful. There are no little steps or small accomplishments, so every step forward is a bright, shining light.

Please share a little bit about your story.

Evie was born on September 7, 2016 with Shone's Complex. Originally diagnosed prenatally with Hypoplastic Left Heart Syndrome, they discovered additional defects after she was born and during her subsequent cardiac caths and surgeries. The initial 8 months of her life were spent, almost entirely, in the hospital. Due to complications following her second open heart surgery, Evie almost died, and we spent much of those months praying for a miracle. In spite of her bumpy start to life, Evie is now happy and thriving at home. She is feisty and sassy and loves playing outside, squealing at the cows that border our property, flashing lights, music, and bouncing. She will have at least one more heart surgery after her 3rd birthday, but for now, she is enjoying ruling her kingdom from the comfort of home.

Riley, age 7

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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.