Support Lyla's Journey Through Brain Surgery

Ok. Many, if not all of you, have asked what you can do to help. And I probably politely said thank you, or made a joke, and never actually answered. Historically speaking I’m not good at this. I’ve learned a bit in the last few years, but it’s not exactly natural for me to ask for help. So here we are. Better late than never, finally letting you know what you can do to help.

Five years ago, just before her fifth birthday, Lyla started having seizures. Not one seizure. Not a couple of seizures. Buckets of seizures. Sometimes 20 in a day. By March of 2020, she had been diagnosed with a rare genetic condition (CHD2 mutation) that causes epilepsy, cognitive disabilities, and autism. And while Lyla is an abundantly joyful and infectiously loving kiddo, she has endured more than 800 major seizures, countless ambulance rides, and more than is really fair to expect of nine years on this planet. I can tout the strength and the love that has gotten us through this, but the truth is this journey has at times taken us all down. Acute pain and prolonged uncertainty. A journey of self-discovery that none of us wanted to be on. But we are on it. We have failed more than 15 medications, and she had a VNS implanted in June 2020. But we have not managed to gain seizure control.

So, on January 13th, five years and four days after her first seizure, Lyla will have the first of multiple brain surgeries to look to reduce the incidence of seizures she’s experiencing. This is a long process that requires multiple procedures and loads of recovery.

Here's what lies ahead.

December 23rd, Lyla will have the battery replaced in her VNS, or her robot, as we so fondly talk about it. This is an outpatient surgery.

December 30th, Lyla will have an anesthetized MRI to ensure clear and accurate imaging of her brain, prior to what comes next.

January 13th, Lyla will begin her stereoelectroencephalography or SEEG. This includes a six-hour brain surgery where electrodes are implanted in her brain through incisions in the skull. The purpose is to identify where seizures originate. We will be staying in the hospital for (likely) two weeks while we attempt to map her seizure activity. This process is only successful if Lyla has multiple representative seizures while we are in the hospital. So, we will be trying to trigger seizures until we collect enough data to draw conclusions. We will likely take her off meds, flash bright lights in her face, deprive her of sleep, etc. We can leave the hospital once we have sufficient data. That could be as long as a month.

Translation: This is going to be miserable for everyone involved. Being in the hospital for two weeks is just generally terrible. I have heard that the electrodes are heavy and it can be uncomfortable to hold your head up. And triggering seizures is my personal hell. We’ve been fighting them for five years, so to deliberately try to have multiple seizures to collect the data is just going to be brutal.

Late February/early March: Another brain surgery. Lyla will have a responsive neurostimulator or RNS placed as a deep brain stimulator or DBS. They will shave part of her hair and remove a portion of her skull to place the generator. They will connect the generator to the electrodes identified during the SEEG. The electrodes can sense abnormal activity in these seizure-prone areas and respond with stimulation that could shut down the seizure before it manifests for Lyla. This is a full-day brain surgery and a 2 week intensive recovery. Full recovery will take at least a month.

May 2025: They will begin turning on the generator and attempting to program it to help reduce seizures. But this is a long game. While 30% of patients see a 50% reduction of seizures in the first year, neurostimulation outcomes improve over time: 83% of patients reported a 50% reduction in seizures after 5 years. It could be years before we see the impacts of these procedures.

The goal of all of this is to reduce Lyla’s seizure activity, reduce her pharmacological load, and give her the best quality of life available. We don’t know if she can be seizure-free, but we are hopeful that by doing this while she’s young, we can give her every chance available.

Many of you have asked what you can do.

1. Keep sending messages and texts. Your words and thoughts are helpful and meaningful. Lyla loves video messages directed at her. Even just quick video hellos make her so happy.

2. Send DoorDash gift cards. Lyla basically lives on bacon but the hospital only has turkey bacon, and she hates it. So we will be ordering an obscene amount of food delivery to the hospital…mostly bacon.

3. When we post her link, buy or donate Girl Scout Cookies. Lyla is missing cookie selling season this year due to all the surgeries. But the activities and community she gets to participate in when we sell 1000+ cookies is her entire social calendar for the year. Going to camp, baseball games, Build a Bear. She has fallen in love with some older girls from another troop but we only see them at 1000+ cookie sellers activities. She absolutely loves these activities. Please buy cookies.

4. Support our GoFundMe. I don’t really know what we will need or want until we are in the hospital. Button front pajamas. Special neck pillows. More arts and crafts activities. Another koala lovey. Bacon. And once we are home, we may need different things or additional support (e.g. night nurses) to ensure Lyla’s safe and Morgan and Alex get some sleep. And after we reset, we will be doing it all over again for the second surgery. Supporting our GoFundMe is a way to support the unknown about Lyla’s recovery and our family’s recovery, over the next three months.

5. Reach out to Leo. This won’t be easy for him either. Mom will be gone a lot. Lyla will have a lot of attention. Play dates, checking in, being his support will be very meaningful for him.

Thank you all for being our people. Thank you for reading this far. I’ll continue to post updates through CaringBridge. Talk soon. ❤️