Judah’s Journey- Maui

Judah’s Journey- Maui Judah is a medically complex and happy 10 year old Maui boy, born with a rare condition called Lowe Syndrome.

Today makes 200 incredible days of Judah being seizure free! (Convulsive seizures, that is, he still experiences the occ...
09/09/2026

Today makes 200 incredible days of Judah being seizure free! (Convulsive seizures, that is, he still experiences the occasional absence seizure lately where he blanks out). That’s roughly 7 months of no hospitalizations or critical status seizure events since our Wish trip on Feb 8 of this year. I can hardly believe it and even though he’s been doing so well, it still brings tears to my eyes to think about because for so long, these were regular monthly/ bimonthly events that he endured in the hospital and now he’s had the most amazing relief and break from them. We don’t know if his current plan of care will continue to work for him long term or if things will change as he continues to grow and mature, but we’ll celebrate each day he can fully be himself, as wild, smart and spicy as he can be. He is doing amazing things and we’re so thankful his brain is allowing him to continue to make big leaps and progress in so many ways.

It’s barely September, so why do we already have Halloween lights and decor up already? Because it makes Judah happy, so...
09/07/2026

It’s barely September, so why do we already have Halloween lights and decor up already? Because it makes Judah happy, so why not?! 😆 We let him enjoy and celebrate holidays as long as we can. Christmas will be set up super early too!

Judah is writing sentences! 😭 I’m so proud of how hard he works at school and grateful for this pic from his EA today. I...
08/28/2026

Judah is writing sentences! 😭 I’m so proud of how hard he works at school and grateful for this pic from his EA today. It wasn’t all that long ago he started just tracing letters and learning to write his name. Now he’s writing more words legibly and in a straight line. I can hardly believe it. Great job Judah! 👏

Happy birthday Daddio! Too bad Judah stole all of your whip cream! 😉🍰 We love you!
08/24/2026

Happy birthday Daddio! Too bad Judah stole all of your whip cream! 😉🍰 We love you!

72 hours and 39 minutes later, our power is restored!!!!! Yahoooo!!!! So grateful! ⚡️
08/19/2026

72 hours and 39 minutes later, our power is restored!!!!! Yahoooo!!!! So grateful! ⚡️

08/17/2026

Judah and Lily put their feet on the window as Judah sang songs to pass the time during the storm. Our power has been out for 32 hours and probably still will be for the next day or two possibly from what we’ve heard. 🤷🏼‍♀️ We lost cellphone service last night until this afternoon so we’re thankful at least that’s back. Nate had to go into work last night so it was scary not being able to communicate and make sure he was ok during the worse part of the storm, but now he’s on PTO for a bit and we’re all together. We are safe and fine, but the kids are definitely a little stir crazy, especially Judah as all of his routines are interrupted by all of this and he doesn’t understand why his fans and lights aren’t working the way they’re supposed to. He also won’t have school tomorrow so he’ll probably be confused about that too. Nate took the kids out for a neighborhood walk when the skies took a break from the rain and we were surprised to see many neighbors fences completely broken down, downed trees and power lines, and the aftermath of the spots where brown rivers had filled the streets just earlier. We’re grateful to be safe and hoping others stay safe too.

Update 12:30pm: our power went out as expected and now Judah is pacing around the house naming every single thing that i...
08/15/2026

Update 12:30pm: our power went out as expected and now Judah is pacing around the house naming every single thing that is not working and asking if I did it. 😂 He keeps telling me to just call “a mechanic” to get it fixed, as it should be that easy during a hurricane. What a guy! We are totally fine and not concerned but have to make light of these storms with Judah.

Original post: Hurricane Lala is coming through the island chain and Judah has been up since 4:30am asking if there’s school today (it’s Saturday), where we are going today (nowhere, it’s windy and rainy everywhere) and if the power is going to go out (probably at some point, but he has asked a million times on repeat). 😆 It’s going to be a long weekend, but I’m glad he’s aware of what’s going on around him. We are completely fine, prepared and safe indoors. I hope everyone else in Hawaii stays safe too!

First day of school swag as a big 5th grader! This is Judah’s final year at his elementary school, so he’s the big boss ...
08/06/2026

First day of school swag as a big 5th grader! This is Judah’s final year at his elementary school, so he’s the big boss on campus!
(Not like he wasn’t before.😆)
We’re hoping for an amazing final year at the school he has been so safe at and has loved dearly since he was in pre-k. 💙

Today was the last day of summer break for Judah, so I wanted to take a moment to reflect and look back on the amazing s...
08/05/2026

Today was the last day of summer break for Judah, so I wanted to take a moment to reflect and look back on the amazing summer he had.

If you’ve known our family or have been following his page for a while, you know that Judah has Lowe Syndrome, and with that comes many ups and downs, medical complications, unexpected heartbreaks, and challenges. Last year, he endured multiple hospitalizations, surgeries, critical seizure episodes, a broken leg, illnesses, and horrible side effects from new medications. We were constantly in survival mode, navigating one overlapping hurdle after another. We didn’t get to the beach much because he was in a cast, and the summer felt dark and heavy, even on the sunniest of days.

Even during his Wish Trip in February, we experienced another traumatic hospitalization, and it felt like we were never allowed a break from his unrelenting syndrome. Fast forward to this summer, and I found myself anxiously preparing for something bad to happen—his usual seizure event, an illness, a hospitalization, a broken bone… something. But nothing happened.

Judah has thankfully been the most stable and healthy he’s been in a very long time. His doctors and specialists have been so pleased with his recent appointments and his overall balance with his medications. He’s had some of the best kidney results he’s had in a long time, his vision is doing well, and today he is an incredible 165 days (5½ months) SEIZURE FREE, the longest streak he’s ever had! He’s also been making big gains in Physical and Occupational Therapy and has been so active, energized, and playful.

It brings tears to my eyes because he had the best summer he’s had in years, and he deserved every moment of it. He got to attend Camp IMUA, participate in his ESY summer school program, swim at the beach and in pools, and enjoy so many outdoor adventures. Watching him thrive and simply have the opportunity to live, play, and be happy has been the greatest blessing this summer.

I know this season of stability may not last forever. As school starts, germs spread and unexpected challenges may arise. But I’m incredibly grateful for the gift of this summer, for the chance our family had to finally breathe, make beautiful memories, and truly enjoy this precious time together.

Judah’s minion birthday party with ESY summer school friends was a blast! 💛 💙
07/22/2026

Judah’s minion birthday party with ESY summer school friends was a blast! 💛 💙

Address

192 Maalaea Rd
Wailuku, HI
96753

Website

Alerts

Be the first to know and let us send you an email when Judah’s Journey- Maui posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share