On Saturday, we drove up to Mt. Rainier with my mom and sisters. We had hoped to bring Amelia up here at some point, but as her lungs weakened, the thinner air would’ve been more and more challenging. It was the first time visiting for my mom, so we’re glad they were able to come!

A couple of quick macro shots. (📸: iPhone 16 Pro with lens attachment)

Six months ago today. Some days, it doesn’t feel real. Other days, it feels like it just happened. We need cures for all types of Batten Disease ASAP. The fewer families that go through what we and others have gone through, the better. Thank you to all the rare disease researchers out there.

Jenn and I celebrated our 22nd anniversary at WildFin in Tacoma, where we happened to spot Graphite, a humpback whale, tail slapping in the distance. Then we watched the sunset at Owen Beach. ❤️

Jenn and I spent Saturday in Seattle checking out Christopher Marley’s Exquisite Creatures exhibit (filled with beautiful art and fascinating animals). Then we joined her sister’s family for a tour of the Freedom Plane documents exhibit at the Museum of History and Industry on Lake Union.

Backyard macro shots. That second one is a butterfly wing, by the way. (📸: iPhone 16 Pro with lens attachment)

Timeline cleanse: Some ducks we met over the weekend. 🦆

Not sure if this counts, but: We have rocks! My wife started a rock-painting account to relieve stress and help promote Batten Disease awareness. We lost our 8-year-old daughter to this fatal rare disease in Feb. and we’re still dropping rocks in her honor. FB/IG: AmeliaPalermoRocks

Amelia’s beach wheelchair enabled us to take her on so many adventures. Now, the amazing Emma’s Exceptional Equipment Exchange has started offering her chair as a loaner for other kids to go on their own adventures. They kindly added a sign to the back of the chair in honor of our girl. 🦋

First Father’s Day without you, Amelia. I hope you know how much I loved being your dad and how much I love and miss you. Left: 2017. Our first Father’s Day. Right: 2026. I’m holding some of her ashes. Please consider supporting Batten Disease research: web.charityengine.net/Main-Donatio...

Happy Father’s Day, dad. I hope you and Amelia are having just the best time playing together in Heaven.

We said goodbye to Amelia’s wheelchair van this week. Sad to see it go, but hopeful it can help another family now. It made a huge positive impact in Amelia’s quality of life and hopefully its next family takes it on even more adventures. We then visited some of the nearby waterfront views.

We went to Northwest Trek for International Batten Disease Awareness Day. I used the lens attachment on my phone. I bought it when Amelia was in the hospital. I held it in her hand and told her we’d use it on all the adventures she still had ahead of her. I miss her so much.

Last, but absolutely not least: a truly inspiring bit of media representation. Team Ball Player Thing gathered some of New Zealand's biggest names (like Taika Waititi, Sir Peter Jackson, Lorde, Kimbra, and Daniel Bedingfield) to raise funds for Batten Disease research.

Another example: Alien: Colony War by @davidmbarnett.bsky.social is set in a world where Batten Disease still exists in the late 2100s. I'd like to believe that's farfetched, but it's a world where Weyland-Yutani exists, so...

In episode 10,086 (!) of Coronation Street, Leanne is invited to a support group for parents of kids with life-threatening illnesses by a mom whose son died due to Batten Disease. "I squeezed every last drop out of my time with him," she says.

Batten Disease gets a brief mention in episode 3 of The Act, starring Joey King. A dad played by Dean Norris (Breaking Bad's Hank) describes losing his young son due to Batten Disease.

The film Love, Kennedy is based on the true story of Kennedy Hansen, who was born with Juvenile Batten Disease. You see her as a typical teen before Batten Disease starts cruelly taking abilities away from her.

A recent example of Batten Disease in media comes from Season 25, Episode 3 of Law & Order. Here, a frustrated parent of a child with Batten Disease takes matters into their own hands. Not the most medically detailed portrayal, but one doctor accurately says, "Batten Disease. It's brutal."

For International Batten Disease Awareness Day (June 9), I'm highlighting Batten Disease mentions in media. First, Netflix's The Saint of Second Chances. This doc follows famed baseball promoter Mike Veeck, whose daughter was born with Batten Disease. It's fascinating and heartbreaking.

Seven years ago today, Amelia was diagnosed with CLN1 Batten Disease. We made it our mission to cherish every second we had with her. She deserved so much more and the sooner there are cures for Batten Disease, the better. This was taken a few days after her diagnosis and I miss that smile so much.

Jenn and I had a wonderful time following a large group of orcas up and down the Tacoma shore this afternoon. We saw quite a few across Commencement Bay and then some of them again closer up, including T68C1, T68C3, and calf T68C3A. 📸: iPhone 16 Pro with 2x teleconverter

Orcas were a little too far to get some decent phone pics yesterday, but I got some fun macro shots of these bees. 🐝

Today, Jenn and I returned to the trail at Pt. Defiance Park that leads to a view of the Tacoma Narrows Bridges. This was the last trail we took Amelia on before she passed. I still remember that day and how we had her BiPAP machine going during the trek. She loved the bumps!

An amazing local group is hosting a virtual fundraiser today. Emma’s Exceptional Equipment Exchange has helped tons of families access special needs gear (including our family). If you don’t have dinner plans yet, adding Fundraiser code 9014228 benefits this incredible group!

Scrub jay grabbing a peanut from our yard. Probably on its way to hide it somewhere. 📸: iPhone 16 Pro with 2x teleconverter lens

Worth a shot.

We explored the Tacoma shore during a negative low tide with Julia and the kiddos today. Saw lots of sea stars, crabs, sea cucumbers, and other marine life. Jenn wanted to see an octopus, but we came up empty there. Next time, perhaps.

Happy birthday to the most incredible, inspiring person I’ve ever met. You astonish and amaze me each and every day and I count myself so blessed to be with you on this journey. ❤️🎂❤️