Finding Forty

For years, stiff-person syndrome has just been part of the landscape of our family.

It means IVIG. It means Tuesdays planned around infusions. It means knowing there is a treatment that helps my husband while also carrying around the quiet knowledge that it manages the disease—it doesn’t cure it.

And there have always been fears.

What happens if the infusions stop working?

What happens if the disease progresses?

And then, after we had children, another fear found its way in.

What if this touches them too?

Stiff-person syndrome isn’t simply passed from a parent to a child, and my husband having SPS does not mean our boys are destined to develop it. I know that.

But knowing something and being a mother are sometimes two entirely different experiences.

Because mothers are exceptionally talented at visiting futures that haven’t happened yet.

I’ve always said, “Maybe medicine will get ahead of this, and those fears will never become our reality.”

I’ve said it over and over.

And when the fears whispered back, I hushed them.

Maybe not.

Maybe my husband’s treatment will keep working.

Maybe our children will never know this disease.

Maybe medicine will advance faster than the disease ever could.

And underneath all of those maybes has always been a prayer:

God, please intervene.

Then my husband casually told me about a clinical trial showing incredible potential for stiff-person syndrome.

I started reading.

Researchers are studying CAR-T cell therapy—an approach fundamentally different from simply continuing chronic immune treatments like IVIG. The research is still early. It isn’t appropriate to call it a cure. There are questions about safety, durability, eligibility, and what happens years down the road.

But researchers are beginning to ask a question that feels almost unbelievable to families living with autoimmune disease:

What if we could do more than continually manage it?

What if we could change the disease itself?

😭

And suddenly I heard all those words I’ve been repeating for years:

Maybe medicine will get ahead of this.

Maybe.

There it was.

Not a promise.

Not an answered prayer wrapped neatly in a bow.

Not a cure.

But something tangible happening in medicine that looks remarkably like the thing I’ve been praying might happen someday.

My mind immediately went to my husband.

And then to my children.

I thought about every future I’ve tried not to imagine. The possibility of treatments failing. The possibility of watching someone I love get sicker. The tiny, terrifying possibility that one day one of our children could face an autoimmune neurological disease too.

And for once, instead of imagining what could go wrong twenty years from now, I imagined something else:

What might medicine look like twenty years from now?

Our children’s medical future does not have to look like their dad’s medical past.

And my husband’s future doesn’t have to look exactly like his present either.

Maybe IVIG keeps working beautifully.

Maybe this treatment becomes an option.

Maybe CAR-T isn’t ultimately the answer but leads researchers to the one that is.

Maybe our boys never need any of it.

God, I pray they don’t.

But tonight that old fear can whisper if it wants to.

Because I finally have something new to whisper back:

Maybe medicine really will get there first.

And maybe the things I’ve been so afraid of will never become our reality.

Maybe, while I’ve been praying for God to intervene, brilliant people in laboratories and hospitals have been doing the work that moves us one step closer.

I don’t know what the future holds.

But tonight, maybe feels a little less like something I tell myself because I’m scared.

It feels a little more like hope. 

Please join us in praying for the success of these studies—for the researchers, the patients participating, and the medical breakthroughs still to come.

Pray that these treatments prove safe and successful. Pray that they become real, accessible medical options. And selfishly, hopefully, faithfully, we ask you to pray that if the day ever comes when my husband needs another option, it will be there waiting for him.

And pray with us that our boys will never need it. ❤️

For so long, I’ve prayed that medicine would get ahead of this before our fears ever had the chance to become reality.

Maybe it will.

God, please let it.