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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Updates

March 15, 2021

Posted

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

Posted

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

Posted

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!!

Posted

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

Posted

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

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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

Posted

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

Posted

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

Posted

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 »