Meet Emily

Child's Diagnosis: CoArctation of Aorta, Bicuspid Aortic Valve 

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

Kerrington’s Heart, Inc. was a resource shared by Emily’s cardiology office at the time of her CHD diagnosis.  I reached out to KHI and they have been a support to our whole family throughout our entire heart journey – diagnosis, surgery, recovery and everyday life.  KHI has also provided our family with education, care packages, and opportunities to connect to other CHD families through Mom’s Meetings and fun, family events throughout the year.  Having a child with heart issues is a lonely and scary experience, and I am forever grateful for all of the support Kerrington’s Heart has generously provided.      

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

I’m not sure if there was anything specific that we wished we would have been told at the time of Emily’s diagnosis.  That said, I would encourage new families to reach out to available resources like Kerrington’s Heart, Inc. even if that is out of your comfort zone.  One of our biggest blessings has been not having to walk this journey alone.   

Please share a little bit about your story: 

Emily was 8-years-old when her CHDs were discovered.  She’s had one open heart surgery at this point and is healthy and thriving.  While she has some physical restrictions, she participates in dance, horseback riding and swimming.  She loves participating in the Wild Hearts Fun Run 5K, Cookies with Santa and the Camp for Courageous Kids each year all made possible by Kerrington’s Heart.   She is a true warrior.   

Meet Lincoln

Child's Diagnosis: Hypoplastic Left Heart Syndrome

Has Kerrington’s Heart impacted your journey? If so, how?: Having the relationships that I've formed from meeting other heart moms, as well as a medical resource for experienced parents of these children, and the financial support often given has made our journey much easier to navigate. I have never felt alone, and always have someone who checks in on us or that I can contact if anything is needed. Before Lincoln was born, I would have never known that I would have needed this much guidance, so I am so very thankful that they were there from the beginning to see us along every step of the way!

What’s one thing you wish you’d been told at the beginning of your journey?: You think it takes a village to raise one child...try raising a special needs child! They have truly been the support system I never would have thought I'd need, and if I must be a member of such a somewhat unfortunate, unexpected 'club', I'm glad I'm in good company with all these heart mommas and families! There is nothing I regret about being accepted into the world of CHD, Lincoln makes it all so easily worthwhile!

Please share a little bit about your story: Lincoln Clay Shockey was born with Hypoplastic Left Heart Syndrome in April of 2015, and has been stealing hearts since the moment we found out his little heart was broken. Diagnosed prenatally at 24 weeks, he has undergone a series of surgical and medical procedures, including the 3 stage open-heart repair known as the Norwood, Glenn, and Fontan surgeries to treat his condition, all by the age of 2. He is spunky, super high energy, very empathetic and loving, and has yet to meet a stranger! Born to 4 older brothers, he was made to be a warrior, and enjoys crafts, playing outside, music, and of course, all things B-O-Y! Given that his medical condition is treated in Philadelphia, he was born a traveler and tourist, and visits his 'extended family' in Philly at least once a year. Most days Lincoln is playing, learning, and interacting like any other 5 year old boy, and aside from his initial condition, he has had only minor delays and minimal medical intervention since the completion of his surgical treatment. He is the center of attention and the rock of our family...even though he is little, he is mighty strong! There is nothing that can stop our little hero, and we cannot wait to see what goodness he brings to this world!