HCU Heroes - Kaden's Story

I met Kaden's parents, Bridgett and Basil, at the very first HCU Conference in Denver, Colorado back in 2011.  That was actually the very first time I'd met any other HCU patients or parents - the beginning of what is now many connections in both the HCU community and the greater rare disease community.  The Zaidi family have been great advocates for HCU and I'm thrilled to run a mile for their son, Kaden, in the Miami Half Marathon this upcoming weekend.

Here's Kaden's story in the words of his Dad, Basil:

I remember the day Kaden was born like it was yesterday....even though I almost passed out in the delivery room! It was in the very early morning of 10/24/2008, about 30 minutes past midnight to be exact, when he brought our family count to four. He was as perfect as we could have ever imagined him to be.

It was about two weeks after his birth when we received a phone call from his pediatrician saying that he had elevated levels of methionine, detected through  newborn screening & that he could possibly have what is known as Homocystinuria. While we'd never heard of Homocystinuria, we were assured that it was likely a false positive and that another blood draw should be done to confirm. Within a few days the confirmed diagnosis of classic HCU was provided to us and we were completely at a loss as to the lack of information that was available surrounding this disorder. Our pediatrician that had 30+ years of experience struggled to articulate exactly what HCU was.

Desperate to get information from an experienced professional, we were put in touch with the genetics group at Phoenix Children's Hospital and it wasn't until after we met the geneticist and dietitian that we understood the importance of managing this disorder through diet and medical formula.

Ten years ago there wasn't near the amount of information, resources and most importantly, a community to lean on and share experiences with. These developments have been instrumental to our family over the past ten years. Kaden is remarkable in making good choices and being conscientious as to what he's eating as well as the importance of getting the protein he needs through medical formula. While he definitely needs a reminder, he understands the nutritional value that comes from his formula and the positive effects of taking his vitamin supplements and betaine. We couldn't have asked for a stronger and more resilient son! 

If you'd like to make a donation to HCU Network America in honor of Kaden or another HCU Hero, please visit my fundraising page for the Miami Half Marathon:

Kristin's Fundraising Page for HCU Network America