Our Story

As written by Matt & Stacie:  "This page is dedicated our son Clayton, and his journey through CPS-1 deficiency. CPS-1 is an extremely rare urea cycle disorder that effects about 1 in 1.3 million births. The CPS-1 gene is one of the two, with NAGS, responsible for starting the urea cycle. CPS-1 deficiency is inherited at birth when a mutated copy of the gene is provided by both parents, meaning...

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Clay Niemesch

Strongsville, OH

Transplant Type: Liver

Transplant Status: Transplanted

Goal: $50,000.00

Raised: $13,323 of $50,000 goal

Raised by 47 contributors


March 15, 2021


I always debate when updating Clayton's journey for you all just how much of our day to share. Typically, we celebrate the good moments on here. Frankly, when... Continue Reading »

March 9, 2021


It was way too nice of a day to spend it inside, so we found a nearby park for a stroller walk. With all of his therapies, appointments,... Continue Reading »

March 7, 2021


In the craziness of Thursday's discharge, I forgot to acknowledge this big guy's nine month birthday! He got all sorts of new equipment to take home for his... Continue Reading »

March 5, 2021 – Discharged!!


After 40 days in the hospital (surprisingly not his longest hospital stay), we are excited to be able to say Clay was discharged this afternoon! His liver is... Continue Reading »

February 28, 2021


Clay is feeling good enough for a? little field trip to the lobby to see Callie. He seemed happy with a change of scenery. He is getting better... Continue Reading »

February 23, 2021


We are so touched. Clayton’s nurse friends from Rainbow 6 sent him well wishes. Thank you to everyone who has helped our little fighter along this journey. We... Continue Reading »

February 17, 2021


Well, we were hoping to post a happy discharge update on Monday, but as always, Clay has his own timeline.   First, the good news. All of his... Continue Reading »

February 8, 2021


Over the last few days Clayton has been more alert. He gets to move around, sitting up in a chair and getting a good shampoo from the nurses.... Continue Reading »

February 5, 2021


Happy 8 month birthday buddy! You’ve had a crazy couple weeks but you have been strong as usual. We love you so much. Here’s to you’re new future!... Continue Reading »