Hey everyone,

So thankful you’re here. Some updates below.

Emma’s First Infusion — this coming Wednesday, 7/3

Emma’s first enzyme replacement infusion is set for this coming Wednesday, 7/3. We’ll check in at CHOA Scottish Rite in the morning, and if it goes well, we’ll head back home that afternoon.

We are incredibly grateful for this season of Emma’s journey to begin. And at the same time, many unknowns still lie ahead. Each infusion begins with testing her spinal fluid for infection. Side effects of the infusion can include headache, nausea, and vomiting. Road trips with Emma haven’t been enjoyable lately, so 4 hours of car time sandwiching several hours of infusion will be a new adventure for all of us.

We also learned that the neurology team has synced Emma’s infusion with their other CLN2 patient, so we expect to meet them Wednesday. This family’s daughter participated in the clinical trial for Brineura (the enzyme treatment drug name), and they are the ones who advocated for CHOA to become an infusion site. If they had not gone before us 7 years ago, we would have had a much more difficult road right now, and quite possibly a cross-country move. The rarity of Emma’s disease is still blowing our minds…that she’s only the second child to need this therapy in Georgia since 2017. We’re grateful the road was paved at all.

(If you’re brave and want to see how the infusion is performed, another Batten mama has shared this video of her daughter’s infusion getting started.)

We celebrated Annie’s 6th birthday!

So many of you reached out with birthday love for Annie! Thank you! She had a great day with all her favorites, and Aunt A (my brother’s wonderful wife, Alana) threw a “mermaid flower pool party” for Annie and cousin Hadley this week. We’re so grateful for precious friends, old and new, to surround our whole family right now.

Night of Prayer & Worship for Emma on 7/28

Timing is still being solidified (likely 5 or 6p), but our church is organizing a time of prayer and worship for Emma on Sunday evening, July 28th. It will be at CityScape Church here in Columbus, and we would love for you to join us if you’re able. We’ll share more details as we have them.

Reflection: Life in the shadows…

Two realities offered to us through the prayers of King David dance in my mind together this morning…

Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me… (Psalm 23:4)

Death has never hovered so closely as it does now. One glance at Emma’s healing wound, inevitable scar…one more heartbreaking little seizure that steals her away for three seconds…one more notification on my phone that someone not too far away is gone, sick, suffering…our days are marked by the inevitability of death as they never have been before. It stands, ever present, interrupting the light of life in an imposing, real way.

And at the same time…

You have been my help, and in the shadow of Your wings I will sing for joy. (Psalm 63:7)

We are living in another shadow, a better shadow. Like the mama bird spreads her wings to hide her young from dangers that would guarantee death, Jesus spread His arms of love wide on the cross to hide us from the true threat of death. His arms took the reality of death so that the shadow of His cross could be our safety. Death is only a shadow here; it has no final say, no power to deal ultimate wounds. Nothing touches us or those we love except that which has passed with divine permission into the safety of our Oneness with Jesus.

If you’re like me at all, I’ve subconsciously feared seasons like the one we find ourselves in now. It really is a nightmare…nearly the worst I can imagine for my child. But there really is a covering, and joy is still part of our story, because the Good Shepherd really is here. He’s in the valley of the shadow of death because He defeated the fullness of death on the cross.

Keep running to the shadow of His wings with us?

What’s next?

• Emma’s first enzyme infusion is on Wednesday, 7/3. These will continue every 14 days for the foreseeable future (years).

• A night of prayer & worship for Emma at CityScape Church in Columbus, GA on Sunday, 7/28.

Resources that have encouraged us lately

• Song: How Much More, Rita Springer and TAYA

• Devotion: Treasures in the Dark, Katherine Wolf

• Sermon: Come and See: I Am the Resurrection and the Life, Jon Tyson

Prayer requests

1. For joy & energy. The demands of normal life, a challenging work season for Stephen, and navigating new medical challenges have not yet lifted, and we need fresh resources from the Lord daily.

2. For Emma’s sleep. Her nights are getting longer, but her sleep is still disrupted every night.

3. For difficult choices re: Emma’s medicine regimen. She’s still having absence seizures every day, and her current medicine is causing quite a bit of brain fog. We have the option of changing her to something new, but every anti-seizure medicine carries its own long list of ill side effects. It’s a difficult decision.

4. That the first infusion goes smoothly. For smooth travel, a peaceful first experience, and grace to love our new care team well.

5. For wisdom to choose future commitments. Now that infusions are on the calendar, we’re considering which commitments (particularly school-year activities for James and Annie) we can make/keep in the months ahead.

We’re thankful for…

• Our church small group offering more help than we can even accept.

• Family showing up for all our kids in so many ways.

• A new small group of “Medical Mama” friends for me.

• Time spent with decade-long friends over the last few weeks; reminders of how Jesus has been faithful for a long time.

We love you all dearly. Thank you for continuing to join this journey with us.

Yours in Him,

Katie & Stephen