Kirstie—Medical Mom—Love To Emma

Historically, by the age of 6 years old, most children with CLN2 Batten Disease will be completely dependent on families & carers for all their daily needs.

When my daughter was diagnosed with Batten disease at 3 years old—a rare and fatal childhood disease—you couldn’t have convinced me that five years later she would still be walking, talking, running, eating on her own, learning new things, sitting unassisted, and seeing with 99% of her vision. I wouldn’t have believed you. Even though I had a little bit of faith in God, fear was louder in that moment.

I was scared. Overwhelmed. My mind was in chaos while my heart was breaking. Her seizures were still high, and our new future looked dark.

Until you sit across from a specialist, see the weight and pain behind their eyes, and wonder what is this doctor about to tell me?—and then hear the words, “Your child has a rare and fatal disease called Batten disease. There is no cure,” you can’t truly understand. It’s not something everyone gets… but it’s something you wish everyone could understand.

What I want people to see, though, is hope.

Emma inspires me every single day. I know in my heart she inspires others too. We’re here—through the good and the bad, the beautiful and the ugly—not pretending this journey is easy, but choosing to show that hope can exist even in what feels like a hopeless circumstance.

I’ve changed Emma’s diet and lifestyle. I’ve researched everything out the wazoo—learning what our cells need, how to support the nervous system, and how to fight when her body lacks TPP1. I’ve tried supplements. I’ve made the hardest choices, including limiting exposure and protecting her world in ways I never imagined I would have to.

But God.

God’s grace and His goodness are why my daughter is here at eight years old, accomplishing more than doctors ever thought possible. Effort matters. Advocacy matters. But it is God who has carried us, sustained us, and written a story that defies timelines, statistics, and expectations.

So if you’re a parent sitting in a doctor’s office today… tomorrow… next week… hearing devastating words you never thought would apply to your child—this is for you.

I can’t promise an easy road. I can’t promise certainty or answers. But I can promise this: there is still hope. Your child is more than a diagnosis. Their story is still being written. And even in the darkest moments, God is still present, still working, still faithful.

“Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us.”
—Ephesians 3:20

#lovetoemma #butgod

4 months ago | [YT] | 7