Welcome to Our HI Hopes Site

This isn’t expert advice. I’m just a mom who once desperately needed an outlet—a place to process, document, and share our journey through Congenital Hyperinsulinism (CHI or HI).

HI is a rare disease that causes my son to be severely hypoglycemic. The cause? Often unknown. The treatment? Sometimes it works, sometimes it doesn’t. The challenges? Many—insurance denials, distant specialists, and an unpredictable life we never saw coming.

We clung to hope—HI hopes—a name that reflects both the reality of Hyperinsulinism (HI) and the faith that things would get better.

And they did.

Today, we are living the “sweet life.” We’ve found our normal, and though I no longer update this page, I remember when it was a lifeline—a space where I could document our fears, our battles, our victories.

Most of all, I remember wanting to publicly recognize those who saved Jackson’s life because they mean so much to us.

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To the Mom Sitting in a Hospital Room…

If you are here because your child has been diagnosed with a rare disease, I want you to know: I was you.

Scared.
Confused.
Exhausted.
Feeling completely alone.

Before Jackson’s diagnosis, I had never even heard the word “Hyperinsulinism”. I had no idea how much it would shape our lives.

Like you, I had to educate myself, fast. I had to read case studies, talk to parents, engage with doctors. I had to learn how to advocate and articulate a disease that most of the world has never heard of.

Not for a college course.
Not for a research paper.
But for my son’s life.

I won’t tell you it gets easy, but I will tell you that you are not alone. There is reason to have HI hopes.

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Jackson’s Journey

Jackson was diagnosed with suspected diffuse Hyperinsulinism. He is diazoxide responsive, but his case has no genetic explanation.

We have pursued answers:
✔ Baylor College of Medicine’s Hypoglycemic Panel – Non-diagnostic
✔ Trio Whole Exome Sequencing (Trio WES) – Non-diagnostic
✔ Next goal: Jackson has volunteered to be part of a research study for Cincinnati Children’s Hospital in partnership with Cook Children’s. This study aims to uncover some of the mysteries behind congenital hyperinsulinism (HI).

We were originally followed by Texas Children’s Hospital’s Hyperinsulinism Program but are now receiving care at Cook Children’s Hospital in Fort Worth.

While Jackson’s HI is now well-managed, we’ve come to understand that HI leaves behind more than just low blood sugar.

HI affected his brain during critical early development, which has resulted in neurocognitive and learning challenges. These are the realities that many HI families face, yet they are rarely discussed in the early days of diagnosis.

But if there’s one thing I’ve learned, it’s that Jackson is strong, resilient, and capable.

And while his journey is still unfolding, we are hopeful, prepared, and ready to support him every step of the way.

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