Meet Alexis
Child’s Diagnosis: Williams Syndrome (May is awareness month)
What’s one thing I wish I was told at the beginning of our journey?:
It’s simple, that it will all be ok.
Please share a little bit about your story:
Lexi is 11 years old and was diagnosed with Williams Syndrome before she was a year old. She had open heart surgery when she was 13 months old. She will need another more extensive surgery very soon. Williams Syndrome is a genetic disorder present at birth and only affects 1 in 10,000 people. People like Lexi are very outgoing and friendly, sometimes too friendly. They are probably the nicest people you will ever meet. Lexi loves life. She loves her family and her animals. She loves to go shopping, eat at restaurants and go to church. Anybody that knows her knows she absolutely loves pizza and McDonald's. Lexi is involved in Special Olympics which she looks forward to every year. Lexi is always happy and smiling. Everywhere we go she has to ask somebody what their name is and ask them how they are doing. She knows no hate at all. Lexi has taught me a lot in the last 11 years and she has definitely made me a better person. Lexi is very special to me and everybody that knows her. If we could all have a touch of WS the world would be a much better place.
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.