A Cure For Everett

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A Cure For Everett Sharing our family’s journey to find a treatment for Everett’s ultra-rare HK1 genetic condition.

Help turn hope into action by donating at www.acureforeverett.org.

10/15/2026

Everett’s big, beautiful eyes need more support.

The good news is that the structures of his eyes look normal, and he doesn’t need glasses. However, there are challenges with the connection between his eyes and brain.

The neuro-ophthalmologist saw abnormalities in his retina, and his pupils are not fully reactive.

Hearing that Everett has a severe visual impairment is hard. You can know or sense things as a parent, but having them confirmed by a neuro-ophthalmologist is a different reality.

We will do everything we can to help Everett see the world as best as possible. We remain hopeful for a future where his seizures are better controlled and an ASO is developed for his genetic condition, making that goal more achievable.

You can support us on our journey to give Everett a world where his beautiful eyes can take in as much as possible at ACureForEverett.org.

Thank you. 🙏

10/01/2026

I saw some adorable Pinterest worthy posts of cute fall handprint and footprint craft projects and thought…easy peasy.

I was humbled. And covered in paint. I should have just taken a nap too.

It was a Halloween miracle he slept through the chaos.

But I have E’s adorable, chubby hand and foot forever on a pumpkin. 🎃 🍂

🧡

Want to help Everett grow big and strong? You can support our journey to raise the estimated $3 million to fund the treatment for his ultra-rare genetic condition at ACureForEverett.org.

E was a tired guy today. Probably because I did jinx us with my post about better sleep 🫠 and he was up more times than ...
09/30/2026

E was a tired guy today. Probably because I did jinx us with my post about better sleep 🫠 and he was up more times than I can recall last night and was setting off his pulse ox alarms too.

🩵

Help us turn hope into action and fund a cure for Everett’s ultra-rare genetic condition.

You can support and donate at ACureForEverett.org.

Thank you 🩵

Everything that goes into a hospital admission also has to be washed. And if something hits the hospital floor…pretty m...
09/30/2026

Everything that goes into a hospital admission also has to be washed. And if something hits the hospital floor…pretty much dead to me.

Yeah, the hospital can be clean and sterile…and also be a great place to pick up a new virus or bug.

I think we did 7 loads of laundry after our last hospital admission. That’s what happens when you bring your own sheets and towels and blankets and clothes and stuffies. After you’ve lived in a hospital for months, it’s worth it to bring some comforts of home, even if it’s just for a night or two.

And once everything is clean at home. I repack our hospital go-bags, because Everett likes to visit his friends at our children’s hospital unannounced.

🩵

Want to help change the trajectory of Everett’s life and help fund a cure for his ultra-rare genetic condition? You can support and donate at ACureForEverett.org.

Every action helps turn hope into action.

Thank you. 🙏

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Lakeway, TX
78738

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