I’ve Never Been More Hopeful That Bitopertin Exists

Dear Sun Gods, FDA, and the Bitopertin Gatekeepers,
We're supposed to be celebrating….

After years of waiting, hoping, and wondering, Claire and David are finally both on the real Bitopertin. This vacation was supposed to be about that. About freedom. About seeing what "normal" might actually feel like.

Instead, XLP reminded us that it always has a way of showing up.

Over the past few weeks, David and I have found ourselves saying the same things over and over:
"What are the odds?"
"How is this even possible?"
"At least there's hope...and Aubrey has already gone 9½ years."

Our youngest daughter, Aubrey, has always had XLP. We've always known it could decide to make itself known someday. I just never imagined it would happen at the exact moment Claire and David were finally experiencing life fully for the first time.
Bitopertin is a blessing.

It's life-changing.

It's the key that unlocks everything they've missed. It's the medicine that lets them stop feeling isolated, stop feeling different, and finally experience the world the way everyone else does.

For 13 years, Claire has been "the one with the sun allergy." She's the one who missed pool days, planned every outing around the weather, and quietly endured pain most people will never understand.

Aubrey was different. She played soccer. She swam like a fish. She loved having tan lines. She was our "normal."

Then, in March 2026, everything changed.

We were skiing in Telluride on one of those unbelievably sunny Colorado days. Everyone in our group got regular-people sunburned. (Welcome to our language.)

Aubrey was thriving. She took her ski lesson without a face mask because...why not?

Then she started saying she hurt…

Your brain immediately goes there, "Surely not...but what if?"

That question never really leaves you when you have XLP in your family.

I brought her back to the condo. David was already hurting from the sun, proof that he had been on placebo during the trial.Claire was completely fine, which still felt unbelievable.

And Aubrey...
Aubrey was screaming.

At first we wondered if it was just sunburn. Maybe swollen lips because she was fried to a crisp. Maybe we'd overreacted, but then came the wet cloth at dinner. Not being able to sit in stagnant hot air, the constant rubbing.

Deep down, we knew, XLP had arrived.

She cried in excruciating pain, needing a cold wet cloth constantly on her face. Her lips swelled. Nothing helped except waiting and hoping sleep would finally give her body some relief. Watching your 9yr old hurt like that is heartbreaking.

Then June came. She started "feeling the sun" in our own backyard while swimming.
Her heels hurt. We did what we knew we had to do: come inside, take a break, and pray she would feel better tomorrow.

A few weeks later, she went to sleepaway camp. She wrote me letters saying she was hurting from the sun. That it was hard to be at camp when she felt that way. Begging me to come get her because she missed us. I couldn't take it. I picked her up so she could come home, stay inside, recover, and then she went right back to finish camp like the tough little girl she is.

This hasn't been one isolated event. It's been months of wondering, weeks of walking on eggshells. Praying every complaint is just a fluke.

All while celebrating that Claire and David finally have a future because of Bitopertin.

It's an emotional roller coaster I don't know how to describe.

Today, on our celebratory beach trip, I'm sitting in our hotel room. Both girls are watching YouTube because I'm a pushover. Aubrey has cold wet cloths wrapped around her feet. Claire is resting after spending the entire day outside in the sun and being "exhausted."

I don't know whether to cheer because Claire got to lie out by the pool like every other 13-year-old or cry because Aubrey's life is changing right before my eyes.

How do you hold both of those emotions at once? Part of me is overwhelmed with gratitude that treatments like Bitopertin exist.

The other part is terrified that we're still not guaranteed access to it.

How is that fair?

I don't know what it feels like to physically have XLP. But I know exactly what it feels like to love three people who do.

It occupies every corner of your brain.
Every vacation.
Every weather forecast.
Every school field trip.
Every family outing.
Every "Should we go?"
Every "Can they handle it?"
It is exhausting….

So tonight, instead of another afternoon in the sun, we pivoted. We'll wander around Coligny Plaza, have an early dinner and wait for sunset. We’ll swim in the ocean once the sun starts to disappear. Then the pool. Then head back to the hotel like so many families do after a full day outside.

We've become experts at pivoting.

But I also know this doesn't have to be our forever.

I've never been more hopeful because Bitopertin exists.

I've also never wanted anything more than for the FDA to approve it.

I don't know who I need to write.
Who I need to call.
Whose hand I need to shake.

I'm the kind of person who doesn't hear "no" very well, and everyone who knows me knows that's true.

So if anyone with the power to help ever reads this...Please, approve this medicine.

Families like mine are waiting.

Disc Medicine has given us something we didn't have before: hope.

I am endlessly grateful for the scientists, researchers, physicians, trial coordinators, investors, and every person who has dedicated years of their lives to making this possible.

Until then, we'll keep doing what we've always done.

We'll take everything we've learned from Claire over the past 13 years and use it to help Aubrey navigate the next chapter.

I pray these next few years pass quickly.

I pray she can join a trial or, even better, simply take an FDA-approved medicine.

But most of all, I pray she never loses the joy that makes her who she is. Because her spirit, her friendships, and her love of being outside shine even brighter than the sun.

With so much hope and my right arm if you want it!
-Allison (Wife and mom of 2 with XLP)