HI Achievers

Dr. Jason Goldberg, UTMB – A True HI Achiever

/ Renee J / Leave a comment

Dr. Goldberg was thrown into the HI world by chance, a perfect storm that brought him and Jackson together. Maybe it was divine intervention.

As many know, Texas Children’s Hospital has been instrumental in diagnosing and treating Jackson’s Hyperinsulinism, but our journey started before we ever landed on their doorstep. It began in Dr. Goldberg’s office… with me, scared and desperate for help.

I had no idea that the new doctor we had to see by default would become the one to help save Jackson’s life.

Dismissed at the ER, Searching for Answers

When Jackson had his first seizure and started acting abnormally, we went to our local ER. The attending dismissed us.

I now know this happens all the time with HI kids. No one looks at a baby and thinks, “I wonder if they are hypoglycemic?”

This doctor made me question myself. He laughed off our concerns and said, “Babies do this all the time when they’re teething. It’s completely normal.” He told us that since we had such a large age gap between kids, it was understandable that we’d overreact.

I regret taking his words to heart.

Because Jackson continued to suffer. His brain continued to suffer.

I became too unsure of myself to seek an immediate second opinion. But after three more days of Jackson’s temperature running cold, zoning out, losing energy, and not crying for food, I couldn’t wait any longer.

Enough was enough.

Meeting Dr. Goldberg

I called our pediatrician’s office for a same-day appointment. She was out. The only option? Dr. Jason Goldberg at UTMB.

I’ll be honest, I was a little disappointed to see someone new. I wasn’t in the mood to deal with an unfamiliar doctor. But I trusted the office, so we took what we could get.

On the drive there, I knew I wasn’t leaving without answers. I couldn’t have another doctor dismiss me. I needed someone to listen.

Dr. Goldberg walked into the exam room and introduced himself.

Before he could say another word, I pounced… looked him dead in the eyes, more desperate than I had ever been, and said:

“Something is wrong with my son. Don’t tell me I’m overreacting. I have common sense, and I am not going to be dismissed. My son needs help.”

I was straightforward and maybe even a little rude.

But he didn’t flinch.

“Okay,” he said. “You know him better than anyone. If you tell me something’s wrong, then something must be wrong. Start from the beginning.”

So I did.

I could see it in his eyes, he knew something wasn’t right. He suspected neurological issues.

Then, he said the words that changed everything:

“Get in your car and head straight to Texas Children’s.”

“If they won’t see him, call me. If I have to keep this office open late and bring in a specialist, I will. Whatever we have to do, we’ll do it. We’ll figure this out.”

I took Jackson and drove straight to TCH.

You know the rest of the story.

When we arrived, Jackson’s blood sugar was 21 and likely moments away from brain damage or worse.

We arrived just in time.

More Than Just a Doctor

Dr. Goldberg continued to follow Jackson’s case through UTMB’s shared system with Texas Children’s.

During our initial three-week stay, he even called us personally just to check in. Not because he had to, but because he cared.

When we were ready for discharge, TCH recommended switching Jackson’s primary care to their system for easier coordination. It made sense.

But we weren’t going anywhere.

Dr. Goldberg helped save Jackson’s life. We were staying with UTMB. We were staying with him.

A Rare Doctor for a Rare Kid

Since then, Dr. Goldberg has:

  • Researched Hyperinsulinism and Diazoxide to prepare for Jackson’s care.
  • Seamlessly coordinated between UTMB and TCH to ensure the best treatment.
  • Never rushed us, no matter how busy he was.
  • Always looked at the whole picture, asking questions and researching every possibility.
  • Truly cared—about Jackson, about our family, about this journey.

There aren’t many doctors like him.

We could never repay him for what he’s done… for keeping Jackson safe and healthy, or for the sanity he’s given me on the hard days.

Days when I’ve shown up at his office stressed, scared, tired, overwhelmed, or even in tears.

Dr. Goldberg is who you want in charge of your child’s health.

My rare kid has a rare doctor.

We’re pretty lucky.

Dr. David Paul, Endocrinologist, TCH

/ Renee J / Leave a comment

Dr. David Paul: My Next HI Achiever.Hyperinsulinism Dr Paul TCH

Dr. Paul was Jackson’s endocrinologist at Texas Children’s Hospital (TCH). We met him on day three of our initial hospital stay, and he was with us for the long haul for many hospitalizations after.

I still remember the first time he walked into the PCU room. He took the lead in the conversation, and I stopped him.

“What is your name, and what is your role?”

Everything was a whirlwind… doctors and nurses coming and going like a revolving door. Everything was running together, and I couldn’t make sense of all the possibilities. But by that morning, I was ready.

I had a pen and paper in my hands, writing down everything he said. I wanted to know it all.

So many things were new.
So many things were unknown.
I was overwhelmed.
I was scared.

My son was sick, and I didn’t know why.

Initially, I refused to Google anything. Told family and friends that if they did internet searches, to please keep us out of the loop. I couldn’t go down a rabbit hole. I needed facts.

Dr. Paul was my main source of information.
He was going to figure this out, and I trusted that.

The Whiteboard Wall & A Doctor Who Listens

By the second morning, when Dr. Paul did rounds, this is what he walked into (see photo below).

Hyperinsulinism Dr Paul TCH 2

I realized the hospital room wall could act as a whiteboard. Our PCU nurse, Renee, gave me a marker, and I went all in.

You can’t see the other five feet of notes to the left of the picture. I needed to visualize it all, to make sense of everything.

Some doctors walked in and chuckled, joking that I looked like I was cramming for an exam.
Some were impressed.
Some didn’t even notice.

Dr. Paul?

He saw my notes and went through them, line by line.
Every. Single. Day.

He never rushed me.

There were times he’d stop by after his rounds, sometimes for an extra hour or more—just to answer my questions. We discussed research papers, case studies, and random thoughts I had in the middle of the night.

A doctor who doesn’t rush you?
A doctor who cares about what you think?
A doctor who engages a mother’s “Google doctorate”? (Yes, eventually, I gave in and started doing online searches).

He’s one of a kind.

An Unsung Hero in the HI World

I liked Dr. Paul right off the bat.

You can see the wheels turning when he’s faced with a complex issue. There’s no mistaking his candor or his intelligence.

Naturally, I searched for information about him online, expecting to find his name all over the Hyperinsulinism world, but my search came up empty.

Not that I need a doctor to have a shelf full of awards to be “experienced” enough to treat my kid, but I was surprised he wasn’t more widely recognized.

Dr. Paul has been treating HI since the 90s.
He has seen and treated more HI kids than most endocrinologists will in their entire careers.

So, while you won’t see his name in big fancy lights, he’s an unsung hero in the HI world.
And in our world, he’s a legend.

Beyond the Hospital Walls

Since our initial hospital stay, Dr. Paul has continued to be an incredible doctor.

✅ He’s visited Jackson during hospitalizations that weren’t even endo-related.
✅ He’s humored me by answering far too many emails and random questions.
✅ He’s introduced us to other amazing doctors.
✅ He’s advocated for us when Jackson was ambulanced to a hospital that was scared to treat him because they had never had an HI patient before.
✅ He’s answered texts on weekends when I was terrified.

Far more than any doctor in any other capacity would have ever done.

A Steady Anchor in the Storm

I truly can’t imagine going through this journey with another doctor.

And trust me, we’ve met a lot of them.
Even other experts.

They were all great, fantastic, even.
But they’re not him.

Not only has he been amazing for Jackson, but he has pushed me to be a critical thinker. Honestly? He makes me wish I had pursued a career in medicine.

Since August 2016, our lives have been unpredictable.
It often feels like we’re caught in a tornado… twisting, turning, at an unpredictable pace.

And the one thing anchoring us down?
Him.

He keeps my fears in check because I know my son is in the best hands possible.
I can ask anything, no matter how silly it may seem to me, and he’s right there to answer.

Dr. Paul will do whatever it takes to keep Jackson safe and healthy.

And I trust him with Jackson’s life.

There’s no better feeling in the world than that.

#WeHaveHIHopes

HI Achiever – Angelica

/ Renee J / Leave a comment

Introducing: Angelica.

Angelica was Jackson’s daycare provider at A Lifetime of Learning, working under the most incredible, loving, and compassionate owner, Brandy Perez.

When Jackson first started showing symptoms, the ER doctor told us he was fine—that nothing was wrong.

But she and I both knew better.

Before Jackson’s diagnosis, he stopped crying for food. Looking back, I think he simply didn’t have the energy to communicate because his blood sugar was dropping so low.

At home, I kept pushing him to eat.

And so did she.

I told her the doctor said he was fine, but in my heart, I knew something was wrong. Still, I second-guessed myself.

In her heart, she knew something was wrong too.

For days—unknown to each other—we were both feeding Jackson on a strict schedule, making sure he ate every three hours, giving him carbs to fuel his body and brain.

Most people might have assumed,
“He’s not crying, so he must not be hungry.”

Or,
“He’ll cry when he needs to eat.”

But not her.

She made sure he ate every three hours, like clockwork—keeping him safe, stable, alive.

By the time I was certain something was wrong, I confided in her.

I will never forget the relief on her face when I told her I was seeking another opinion.

That look confirmed everything. I wasn’t losing my mind. Something was wrong. And she agreed.

A Lifeline

Angelica is Jackson’s daycare teacher.

I have thanked her and cried with her more times than I can count—but it never feels like enough.

How do you thank someone for helping to prevent brain damage in your child?

How do you thank someone for keeping your child alive?

You can’t.

No amount of “thank you’s” or tears will ever be enough.

We owe so much to her.

I dread the day Jackson outgrows her classroom. The thought makes me queasy.

She continues to take such incredible care of him—checking his blood sugar, feeding him, helping him meet milestones, and providing a safe, loving place for him to learn and grow every single day.

I wish I could keep them together forever.

I trust her as much as I trust myself—and that says everything.

Angelica, Thank You.

Thank you for being kind, loving, intelligent, and for trusting your instincts.

We are so blessed to know you—and I am honored to share my son with you.

There are plenty of great things to say about his daycare, but I’ll save that for another day.

This one belongs to Angelica.

HI Achievers

/ Renee J / Leave a comment

I’d like to highlight all of the people and medical professionals that help guide us on our journey. There are already so many! We live in Houston, TX, with access to the Houston Medical Center. We’ve met fabulous doctors, organizations that raise money and awareness, and many unlikely heros.