Meet Joshua

Child's Diagnosis: At birth he had Truncus Arteriosus, AV Canal Defect, Cleft Lip and Palate...he then underwent surgery at 1 week old to have PV bands placed...at 4.5 months old he had a Heart Transplant on 04/18/15.

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

Yes, they have been a constant support system and always sending inspiration or way in times of stress and worry...they have also helped us during the holidays by having our family be adopted so my children were able to receive gifts at Christmas...they have also helped out financially when we were struggling by giving gas or grocery cards.

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

That my life was never going to be the same and that there is always someone out there to help you just have to know whom to ask...also that a complex kiddo requires a lot more patience and the ability to learn on your feet and just go with the flow...

Please share a little bit about your story:

We found out during the anatomy scan about our son's initial situation and we knew then things would be challenging going forward but we never expected things to be as crazy as they are...we anticipated routine repairs and labs as he grew...we never expected cardiac arrest, transplant, tracheostomy, feeding tubes and other medical conditions...we got more than we bargained for but I never regret fighting for my little man...he is a true miracle and makes me a better stronger person that I ever thought I could be.

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.