Hello family and friends!

Sending a very full and mixed update today — we are so grateful for your continued love, prayer, and support.

Eye Infusions Begin THIS FRIDAY - March 27th!

We are so grateful to report that the first Brineura eye infusion at CHOA took place in February for one of our Batten buddies. Emma’s first infusion will be Friday, March 27th. Please continue to pray for this process. We are deeply thankful for the various teams that have worked together to make this procedure a possibility for Emma and her 3 Batten friends. CHOA neurology, Emory ophthalmology, the AFLAC infusion center and pharmacy, and CHOA IT (and probably plenty of others!) have all come together to offer this treatment.

Emma will begin her regular infusion day early in order to be receive the eye injection of Brineura under general anesthesia. We expect she’ll have the first slot in the OR at 7:30a. We’ll be staying near the hospital overnight to be ready to arrive at 5:45a. As she comes out of anesthesia, she’ll have her port accessed so that she’s ready to begin her regular infusion. Please be praying as all these logistics are fine-tuned, these 4 pairs of eyes begin to receive treatment, and we adjust to new monthly rhythms for infusions.

GI Challenges

I’m sad to report that Emma kicked off 2026 with severe GI infections. After antibiotics for a staph infection in December, she suffered a C diff infection throughout January and February. Resistant to the first antibiotic for C diff, we found she also had E. coli when we took her to the ER at Scottish Rite in late February. She completed new antibiotics, met her new GI doctor, and came through inexplicable constipation shortly thereafter. Please be praying for her gut to heal and her health to stabilize again? We are grateful for her new GI physician, for the incredible CHOA network (to be in the ER and have them on the phone with her specialists was huge!), and for her return to some normalcy.

Changes Ahead

Our family has spent the last 9 months in prayer and seeking wisdom about where we need to be planted for the duration of this journey with Emma. Between her increasing number of CHOA appointments and Stephen’s travel in and out of the Atlanta airport, our family is averaging at least one trip to Atlanta each week, and the toll is wearing on all of us quickly. These life logistics led us to ask some deeper questions about where we would all thrive in the season ahead, and intentional exploration has brought us to believe the best thing is to relocate to Fayette County this summer. The Lord is leading us toward a particular faith community there, and so we begin to step out in confidence that He is making a clear path in all regards. Such a move comes with so many emotions, a whole lot of grief, and also a hope that there will be more stability on the other side of upheaval. We are grateful for clear direction.

Seizures GONE in flux || a reflection on answered prayer & relapses

Since her diagnosis in April 2024, Emma has been on 7 different seizure medications, none of which have completely controlled her absence seizures at any point. Some of those drugs have made her seizures worse, and all but 2 have altered her personality and sleep quality to insupportable extremes. Given the severity and worsening of her seizures, several months ago her neurologist had us schedule an appointment with a genetic epileptologist to expand her care team and try to find solutions that work for Emma.

We met this new physician early in February and astounded him with our report that Emma had actually had ZERO seizure activity since January 3rd. We shared how we tweaked the timing of her current meds — he said that should have no bearing. He said her infusions have finally made a difference in her epilepsy — her seizures showed no gradual improvement but stopped OVERNIGHT. Not only that, but Emma began to show symptoms of a C diff infection on January 2nd which went undiagnosed (and therefore untreated) until January 27th and should have worsened her epilepsy. Emma had a dozen or more seizures on January 3, 2026, but she had not had a single one since.

All I could do was to look our new doctor in the eye and tell him the only thing I know for sure — there is a God who made Emma’s brain and has power over what happens inside of her body. We have prayed and He has answered. Our doctor agreed 100%.

Now, since I first drafted this note at the end of February, we’ve seen some resurgence of mild absence seizures. They’re nothing like they were…but they’re definitely back. And it hurts to admit it. It’s possible her high-powered antibiotics lowered the threshold…it’s possible she’s regained some weight and added inches and is outgrowing her dosage…or it’s possible she’s declining, almost invisibly. Her life today is so much happier and safer than her life in December, and for that we are grateful. Even so, would you please pray?

As people of faith, we look to the cross of Christ and know that His love does not always look like healing or improvement or happy endings. We look to the empty tomb and know that He can do all these things and more. But we treasure Christ crucified, we say yes when His invitation is deeper into suffering rather than out of it, and we praise Him for every grace along the way. He is still good when our reports contain decline, and also today we praise Him for the gift of quality of life. Sorrow and joy, grief and gratitude, handfuls of both at the same time until The End.

💖 Emma’s Golden Birthday 💖

We have been celebrating FIVE YEARS OF EMMA all month long, and it has been a joy! She turned 5 on March 5th (her “golden” birthday), and we celebrated with family and friends this past weekend. All her favorites came together beautifully — dancing, friends, Bluey, and face paint. We are so grateful for the people who make her daily life so rich and meaningful. It was glorious to celebrate together.

Prayer Requests

• Pray for Emma’s gut health — for peace in her body and total healing from infection, for clear next steps on caring for her digestive system long-term

• Pray for our family’s move — for all the logistics of setting up life, for our hearts as we finish our school year, for James and Annie as they navigate a new anticipatory grief

• Pray for Emma’s first eye infusion on March 27th — for logistical ease, for successful treatment, for the preservation of her vision for many years to come

• Praise God for 2 months seizure-free! And please pray this resumes!

• Pray for deep sleep for all 🙃 

Resources We’re Loving

• The Crucifixion by Fleming Rutledge

• To Seek and To Save by Sinclair Ferguson

• Psalms from the Well, Vol 2 by The Worship Initiative

Thank you for continuing to pray for and support Emma and our whole family. We love you. You’re making a difference in her story. To God be the glory.

More from us soon, friends.

With so much gratitude,
Katie