Tucker's NKH Journey: A Story of Strength, Hope, and Rare Disease Awareness

The Day Tucker Was Born

Tucker was born August 9, 2024. He came out screaming like any other baby, and we were overjoyed. But as the days went on, he was more sleepy and started feeding less. Something didn’t feel right.

When Everything Changed

When he was just 5 days old, he all but completely quit breathing on us. We rushed him to the ER, and they were able to get him intubated and stable. It was the scariest moment of my life—seeing my baby like that. The doctors ran so many tests but couldn’t pinpoint the cause, so they decided to have him transferred to a children’s hospital 4 hours from our home.

A Long Hospital Stay and a Possible Answer

After about 2 weeks at the children’s hospital, the doctors thought they had the answer. They suspected NKH—Nonketotic Hyperglycinemia. While we waited for DNA test results to come back, they started treating him with dextromethorphan and carnitine, and later added sodium benzoate.

Our Miracle Moment

Tucker was finally able to be extubated on September 1st at 9 in the morning. It was such a beautiful moment. After 36 days in the hospital, we were finally able to come home.

Life Now and Moving Forward

Tucker is now 6 months old. He’s doing so well. He’s slightly delayed in a few things, but he’s in physical and occupational therapy and progressing really well. He has a big sister who absolutely adores him and wants to love on him all the time. We’ve been told to treat him like a normal baby until he shows us otherwise—and that’s what we’re doing. I am so grateful with how far he has come. He truly is my miracle baby.

I know we still have a long road ahead of us, and there’s no way to know what the rest of his life will look like. But I can promise you this—we’re fighting for him every single step of the way.

NKH Awareness Month: Why It Matters

May is NKH Awareness Month, and it’s something I never even knew about until we found ourselves living it. NKH is so rare—only around one in every 60,000* babies are born with it. And because it’s so rare, there’s not enough research or funding for better treatments. That’s why awareness is everything.

By raising awareness, we bring attention to families like ours. We encourage research, better care, and maybe one day—a cure. So many families are living through rare diseases that most people have never even heard of. Your awareness and support make a real difference.

You can make a difference today by donating directly to the University of Colorado, where Dr. VanHove studies NKH. Join the Hope for Heroes campaign and help us reach our goal!

Click Here to Donate Today!

In Gratitude

Thank you to everyone who has been part of our journey—doctors, nurses, therapists, family, friends, and even strangers who offered prayers. And most of all, thank you to my sweet Tucker. You are stronger than I’ll ever be, and I’m so proud to be your mama.

Frequently Asked Questions

1. What is NKH? NKH, or Nonketotic Hyperglycinemia, is a rare genetic disorder where the body cannot break down glycine, causing it to build up in the brain and other tissues.

2. How is NKH diagnosed? NKH is diagnosed through metabolic and genetic testing, including checking glycine levels and confirming gene mutations.

3. What are early signs of NKH in babies? Signs may include sleepiness, poor feeding, weak muscle tone, breathing issues, and seizures.

4. Is there a cure for NKH? There’s no cure right now, but treatment can help manage symptoms.

5. How can I help raise awareness? Share stories like Tucker’s. Support NKH research. Spread the word during NKH Awareness Month in May.

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