Hi everyone, Stephen here.

Many of you have subscribed to our list since our first note on May 30th. If that is you, thanks for joining our team. It’s great to have you here. We continue to not feel alone, and that’s a huge blessing. 🤍

The last few weeks have felt like a “sprint start” to a marathon — running hard at the outset of the race because that’s somehow what the course requires. And yet, we know we’ll need to find some way to settle into a pace in the coming weeks.

Emma’s been extremely irritable (we hope this is a side effect of her current anti-seizure medicine we’re in the process of transitioning), we’ve had much medical administrivia to navigate, and my workload for Charityvest has been as full as ever.

But we’re so grateful to those around us who are holding us up — from childcare to cleaning, to meals, to speaking encouragement to our kids...our community has been incredible. We’ve experienced the practical kindness of Christ through many of you. Thank you already.

Though we haven't had the bandwidth to think much about updates, given Emma's upcoming procedures, we want to get at least the basic info out to you this week.

An additional EEG this Thursday

Emma’s been having what we and our neurologist think may be “microseizures.” Basically, Emma will mentally “go absent” for a split second, even while doing something interactive. We’ll do an extended EEG at Children’s Healthcare of Atlanta (CHOA) on Thursday to try and pick these up (if they are indeed seizures). This will help us take the next steps on Emma’s anti-seizure regimen.

Neurosurgery this Friday

We are starting Emma on an enzyme infusion treatment that will help slow the progression of her disease, essentially keeping her walking/talking for longer before her decline accelerates further out in the future. The drug is called Brineura. She needs to have a reservoir installed on her brain to receive the Brineura fluid. Neurosurgery at CHOA will install that reservoir this Friday.

It’s a fairly straightforward procedure (as neurosurgeries go) as she’ll only need one day in-patient in recovery.

After starting the treatment, she’ll receive an infusion of enzymes at the CHOA hospital every 14 days for the remainder of her life. It takes a full day at the hospital to receive.

In a sense, this will mark a new chapter of life for us.

A new “home base” for this newsletter

On an admin note, we’ve decided to host this newsletter at www.kump.family on a platform that will allow us to easily send formatted emails (like this), manage subscribers, and have all of our updates archived in one “place.” If you have ideas or feedback for how we can improve it, please share. Feel free to share the URL with friends or simply forward them one of our emails, too.

What can you do for us?

• Pray! See requests below.

What’s next?

• EEG & Neurosurgery

• Regular enzyme infusions will start this month

• A night of prayer & worship for Emma at CityScape Church in Columbus, GA in the next few weeks (date TBD)

Resources that have encouraged us

• Song: Daily Bread, Pat Barrett & Kari Jobe

• Book: Prayer, by Tim Keller

Prayer requests

1. We would be filled with hope — our hearts not weighed down by tasks, tests, treatments, and red tape.

2. Emma’s surgery would be successful.

3. Emma’s sleep — she’s not been sleeping well, and she’s much more irritable.

4. Wisdom for some upcoming travel & decisions within my (Stephen’s) work.

5. James and Annie would feel loved and cared for despite the disproportionate attention given to Emma’s urgent matters these days.

We’re thankful for…

• Our family’s and church community’s love and care for us.

• A single trip to ATL for the EEG & surgery instead of two.

Your encouragements — notes, calls, and texts continue to minister to us.

Love and gratitude,

Stephen & Katie