Jackson didn’t pass the cure fast. He became unstable quickly, and I cried—a lot. I was so desperate for relief. But if there’s a silver lining, it’s that he isn’t worse. We are still managing his disease as we always have. Hyperinsulinism continues to be our reality.

Due to some scheduling delays, we got a late start. We officially began the study on Saturday afternoon, and within 24 hours, he became unstable. He started requiring feeds every two hours just to keep his blood sugar above 70. About 20 hours off diazoxide, his blood sugar was headed into the 40s—a clear sign that he is still severely hypoglycemic.

We administered double the glucagon we had in the past to bring his sugar back up. We also ran critical labs again. The results, once more, confirmed congenital hyperinsulinism—ketones were at 0.10, and insulin levels were high. With that, we stopped the study, restarted his medication, and spent the next few days rebuilding it in his system to get him stable again.

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Finding Strength in Unexpected Places

During this visit, we were blessed to be followed by Dr. Nadia Merchant, who consulted with Dr. Paul along the way.

Dr. Merchant is an incredible doctor, originally pursuing a fellowship in genetics before shifting to endocrinology—two of the most complex fields of medicine. She’s also one of the most intelligent women I’ve ever met.

And she knows a thing or two about overcoming obstacles. Dr. Merchant is a little person, standing at 3’6” tall. She told us how people always tried to put her in a box, to limit her. But her parents never let that happen—they pushed her. She wasn’t allowed to use her genetic condition as a crutch.

She sat with us for nearly an hour. She knew how disappointed we were, but she reassured us—there is still so much to be thankful for. And we agree.

• Jackson has medication that works—and works well for him.
• We live in the U.S., with access to some of the best doctors in the world.
• We live in Houston, home to the Texas Medical Center and a hospital experienced in managing HI.
• We have doctors who truly care about Jackson—not just as a patient, but as a person.

We have a plan moving forward—more tests, more programs, more opportunities. Dr. Merchant isn’t even our main doctor, but she committed to seeing us through. She admitted it won’t always be easy, but with such a strong support system, she believes Jackson’s potential is limitless.

It’s not the answer we wanted. But we’re committed to making the best of our situation.

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New Challenges: The Battle Beyond HI

Unfortunately, HI isn’t the only thing we’ve had to worry about.

Jackson’s lungs continued to deteriorate. Nine hospitalizations, each requiring high-flow oxygen just to get him through various viruses.

We cycled through diagnoses:

Reactive Airway Disease
Asthma
And then, a ton of possibilities that didn’t fit.

Inhaled steroids? No improvement.
Breathing normally? Never.

After countless appointments, a triple endoscopy, a swallow study, and permanent lung damage, we finally learned the truth:

He has silent aspiration.

He has been aspirating his whole life, and we never knew.

The cause?

• A laryngeal cleft
• Vocal cords slightly too short, preventing them from closing properly

Last week, he had two procedures, and we’re praying for improvement.

This road is long. It’s exhausting. It’s heartbreaking. But it’s also filled with hope. Because no matter how many times we fall, we keep getting back up.

#WeHaveHIHopes