test strips

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 I’m asking you to stand with the #raredisease community to ensure it is not weakened or repealed as part of tax reform.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.