Letter from Our Founder: From the Bunker - and Beyond It

I'm writing this from a rare place: somewhere other than home.

I'm traveling to see my mom. I'm genuinely excited. And I'm also carrying a tangle of emotions I don't usually have time to feel — because when I'm home, I'm in the bunker.

Being in the bunker means being tactical, calculated, and relentlessly doing. There isn't room for much else. To give you a sense of what one day looks like:

Just yesterday, I spent 90 minutes on the phone with insurance sorting out prescription coverage — because even the children of an insurance executive are not immune to insurance hassles. I tried to parse a newly published scientific paper on FAM177A1. I played toddler games with my adult-sized son, and then watched him seize for nine minutes. I messaged Cooper's doctor to discuss adjusting the three anti-seizure medications he's already on — all of which seem to be failing him. My husband Doug and I had one of those hard conversations about whether brain surgery might be the next step. I connected with another FAM mom whose daughters are also on multiple medications but still seizing, uncontrolled — a reminder that we are not alone in this, even as it feels that way. I changed a diaper and ran laundry on "sanitize" to make sure the bodily fluids were thoroughly gone. And I tried to find a pocket of time to plan our upcoming fundraising gala.

This is a single day. This is every day.

Four times in the last four weeks, Cooper has had seizures severe enough at school to require rescue medication and a 911 call. The paramedics know him by name — kind enough that I'd invite them to his next birthday party. The school staff are equally wonderful: attentive, caring, and devoted to him in ways that mean everything to our family.

But every time I race to school, I'm heartbroken. Not because of what I'm about to face, but because of what I wish I were arriving for instead. I want to come to his school for a game, a concert, a PTA meeting. I want to be a regular school mom. Instead, I arrive to hold my sweet boy, to pray the seizure ends before he needs more medication, and then — once it does — to convince the paramedics that despite everything we all just witnessed, I feel safe bringing him home.

In the bunker, the feelings have to wait. There's only the next problem to solve.

But when I step away — when I'm somewhere quiet, somewhere that isn't home — they find me. The fear that these seizures could take Cooper from us. The anger that things are getting worse, not better. The frustration that more effective treatments for our FAM warriors aren't here yet, and the desperate hope that the research we're supporting will change that.

I am deeply grateful for a husband who encourages me to take space, and for the capable, loving caregivers who help hold everything together while I'm gone. That support makes this possible.

I'm going to see my mom. I'm going to let myself feel all of it. And I'm going to come home ready to climb back into the bunker — because that's what our kids need, and because we are not done fighting.

With love and relentless hope,

Jill Hawkins

Founder & President

FAM177A1 Research Fund