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It’s more than a news headline – This could change everything.

/ Renee J / Leave a comment

I know this is a long post, but if you have a few minutes, I hope you’ll read it and continue supporting my family and others like ours. The more you know!

The Orphan Drug Act (ODA) was passed in the U.S. in 1983 to encourage drug companies to research and develop therapies for rare diseases. Why is it called “orphan”? Because rare disease therapies generally lack sponsors to develop them. The market is small, research is expensive, and there is very little return on investment.

There are over 30 million Americans living with more than 7,000 rare conditions—yet only 5% of these diseases have an approved treatment. This means that the majority of those affected have no treatment options at all. For many families, taking a loved one home and being told to “make the best of the time they have left” is a devastating reality.

To incentivize research, the Orphan Drug Designation grants manufacturers and sponsors a 50% tax credit on qualified clinical testing, along with access to several grants to help offset development costs. According to the FDA, in the decade before the ODA was passed, only 10 treatments were developed for rare diseases. Since then, this incentive has helped bring nearly 500 new medications to patients—a proven track record of success.

Today, the House passed the Tax Cuts and Jobs Act, and the Senate will vote after Thanksgiving. This bill includes a proposal to repeal or weaken the Orphan Drug Tax Credit. This is one of the few tax credits that has directly saved lives. I’m asking you to stand with the #raredisease community to ensure it is not weakened or repealed as part of tax reform.

How Can You Help?

Follow the link below, enter your address and zip code, and a pre-written letter to your senators and representatives will be generated for you. All you need to do is enter your name, home address, email, and hit submit. It’s that easy.

https://salsa3.salsalabs.com/…/p/dia/action4/common/public/…

As always, thank you so much for your support. xoxo

#TheMoreYouKnow #WeHaveHIHopes #Hyperinsulinism #OrphanDrugs #TaxReform

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Sugar Bugs

/ Renee J / 2 Comments

Lancets and Test Strips

They say a picture is worth a thousand words, but looking at this picture, I could tell you thousands.

These lancets and test strips are from our sharps container at home—all from glucose checks—and this isn’t even half of what we’ve used over the last few months.

To me, these are:

  • Hundreds of pokes on the sweetest baby toes you’ve ever seen.
  • Scared moments when his sugar dropped too low.
  • Late nights and early mornings, woken by his crying.
  • CGM calibrations, testing how new foods affected his sugar.
  • Moments of panic when he was throwing up, and we didn’t know how long we had before he’d become hypo—when we were checking every 30 minutes or less, all while rushing through Houston traffic to the Texas Medical Center.

But mostly—thankfully—these were our reassurance that he was okay.

This is what our lives have revolved around for the last nine months.

Checking for “Sugar Bugs”

Somewhere along the way, we started calling it “checking for Sugar Bugs.”

No idea why—one of us said it, and it stuck.

“How many Sugar Bugs are we going to find? Let’s catch lots and lots of them! Yay! We found 92!”

Seems a little silly, but we’re trying to make it fun, to make it positive.

He doesn’t cry anymore when the lancet pierces his skin.
He doesn’t wake up when we poke him at night.
His big toes are so callused now that sometimes, getting a single drop of blood is a challenge.

I remember when we first started this journey—his tiny toes red with bruises, worn from too many pokes.wehavehihopes toes

A Cure Fast & A Mother’s Hope

Now, here we are—just days away from the start of our Cure Fast at Texas Children’s.

I am so anxious.

We’ve slowly reduced his Diazoxide intake from 9.54mg/kg to 8.18mg/kg.

So far, he’s doing really well. A few numbers near 70, but for the most part, he’s hanging around 120.

I pray that’s a good sign.

I’m scared to be disappointed because no matter how many times I tell myself “Don’t get your hopes up”—they’re up.

After all, I’m a mom with HI Hopes.

It’s who I am.

I want this so badly for him.
For us.

The next two weeks will be a rollercoaster of emotions, but I want to know.
It’s the not knowing that makes me feel crazy.

If he has to live with HI longer—or even for the rest of his life—we’re going to manage.
I know that.

But I pray he doesn’t have to.

Dreaming of a Life Without HI

One day, I hope that when I look at that pile of lancets and test strips, the words that come to mind are in past tense.

That they become things we used to have to do.

That they turn into distant memories, replaced by new ones in a life free of Hyperinsulinism.

How sweet that life could be.

I don’t know if that’s what’s in store for us.

But I’m holding that dream close to my heart—and never letting go.

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.