Philip Palermo
@palermo.bsky.social
Father of a child with CLN1 Batten Disease (searching for funding for research into first-ever cures)
Open to work. I used to make videos at TV Guide, GameSpot, Fandom, Cord Cutters News
GoFundMe for Amelia’s medical expenses: https://gofund.me/e02c7708
Open to work. I used to make videos at TV Guide, GameSpot, Fandom, Cord Cutters News
GoFundMe for Amelia’s medical expenses: https://gofund.me/e02c7708
46. 🧁🕯️
Grateful for everyone in my life!
(Just wish at least one of y’all was wealthy enough to fully fund Batten Disease research, but I’m digressing… 😉)
Grateful for everyone in my life!
(Just wish at least one of y’all was wealthy enough to fully fund Batten Disease research, but I’m digressing… 😉)
December 6, 2025 at 4:10 AM
46. 🧁🕯️
Grateful for everyone in my life!
(Just wish at least one of y’all was wealthy enough to fully fund Batten Disease research, but I’m digressing… 😉)
Grateful for everyone in my life!
(Just wish at least one of y’all was wealthy enough to fully fund Batten Disease research, but I’m digressing… 😉)
Here’s our old cat Phoebe stretching on the couch.
December 4, 2025 at 5:46 PM
Here’s our old cat Phoebe stretching on the couch.
I really hate giving our 8-year-old oxycodone, but I hate Batten Disease even more.
December 4, 2025 at 5:39 PM
I really hate giving our 8-year-old oxycodone, but I hate Batten Disease even more.
Here’s further info on what your donation would enable!
December 2, 2025 at 10:07 PM
Here’s further info on what your donation would enable!
Grateful that freelancers get little bios at Wirecutter. I used mine to spread a little Batten Disease awareness.
December 2, 2025 at 12:09 AM
Grateful that freelancers get little bios at Wirecutter. I used mine to spread a little Batten Disease awareness.
Last night, Jenn read some of her mom’s Christmas books to Amelia. ❤️
December 1, 2025 at 3:54 AM
Last night, Jenn read some of her mom’s Christmas books to Amelia. ❤️
Not going to name names, but someone was feeling pretty crabby this morning. So we took a quick walk through the Naches Trail Preserve.
November 29, 2025 at 3:11 AM
Not going to name names, but someone was feeling pretty crabby this morning. So we took a quick walk through the Naches Trail Preserve.
If you’ve ever wanted to do something to support Amelia and other kids with rare diseases, here’s an excellent and easy way to do just that!
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
November 27, 2025 at 3:25 AM
If you’ve ever wanted to do something to support Amelia and other kids with rare diseases, here’s an excellent and easy way to do just that!
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
Different kind of outing on Saturday! We took Amelia around the Tacoma Art Museum and the Bridge of Glass in Tacoma. Bet she would’ve loved how warm the glass-blowing area usually is, but we stuck to the outdoor areas!
November 24, 2025 at 2:29 AM
Different kind of outing on Saturday! We took Amelia around the Tacoma Art Museum and the Bridge of Glass in Tacoma. Bet she would’ve loved how warm the glass-blowing area usually is, but we stuck to the outdoor areas!
It’s been a long while since we visited the Billy Frank Jr. Nisqually National Wildlife Refuge, and we weren’t 100% how accessible it would be for Amelia’s wheelchair. But we had a lovely time on the boardwalk loop and got just a little distracted by all the tiny mushrooms popping up.
November 19, 2025 at 10:41 PM
It’s been a long while since we visited the Billy Frank Jr. Nisqually National Wildlife Refuge, and we weren’t 100% how accessible it would be for Amelia’s wheelchair. But we had a lovely time on the boardwalk loop and got just a little distracted by all the tiny mushrooms popping up.
Amelia’s feeling better after a rough, uneven week, so we explored Kubota Garden in the Rainier Beach area of Seattle. Even on a misty, drizzly day, it’s clear this is a lovely place to get lost in. Can’t wait to return on a sunnier day!
November 16, 2025 at 4:27 AM
Amelia’s feeling better after a rough, uneven week, so we explored Kubota Garden in the Rainier Beach area of Seattle. Even on a misty, drizzly day, it’s clear this is a lovely place to get lost in. Can’t wait to return on a sunnier day!
Amelia’s been more agitated lately, partly due to an ear infection. Last night, she dealt with a vicious cycle of agitation, high heart rate, and rapid breathing that led to congestion and lower oxygen levels.
In other words, it was a long night.
In other, other words, Batten Disease sucks.
In other words, it was a long night.
In other, other words, Batten Disease sucks.
November 15, 2025 at 12:22 AM
Amelia’s been more agitated lately, partly due to an ear infection. Last night, she dealt with a vicious cycle of agitation, high heart rate, and rapid breathing that led to congestion and lower oxygen levels.
In other words, it was a long night.
In other, other words, Batten Disease sucks.
In other words, it was a long night.
In other, other words, Batten Disease sucks.
I might not be the first to suggest this, but NBA Highlight video thumbnails would be more fun if they maintained the height difference between the two spotlighted players.
November 13, 2025 at 5:27 PM
I might not be the first to suggest this, but NBA Highlight video thumbnails would be more fun if they maintained the height difference between the two spotlighted players.
We did some whale chasing today as we hit three different parks to catch a glimpse of orcas. We made stops at Dune Peninsula, Titlow Park, and Chambers Bay and it was amusing to see some of the same people in multiple locations.
Did my best handholding my phone up to the eyepiece of our binoculars.
Did my best handholding my phone up to the eyepiece of our binoculars.
November 8, 2025 at 7:00 AM
We did some whale chasing today as we hit three different parks to catch a glimpse of orcas. We made stops at Dune Peninsula, Titlow Park, and Chambers Bay and it was amusing to see some of the same people in multiple locations.
Did my best handholding my phone up to the eyepiece of our binoculars.
Did my best handholding my phone up to the eyepiece of our binoculars.
One of my Illustrator training course assignments was to create a game or comic book character. So I took two reference photos of Amelia in her awesome beach wheelchair, set up a 128x128 grid on top, and filled in each square to create a pixel art Amelia!
November 7, 2025 at 1:20 AM
One of my Illustrator training course assignments was to create a game or comic book character. So I took two reference photos of Amelia in her awesome beach wheelchair, set up a 128x128 grid on top, and filled in each square to create a pixel art Amelia!
We’ve managed to avoid the ER since Feb/March, but Amelia’s been a bit agitated with an elevated temp. She’s prone to more seizures when she’s too warm, so we’re being proactive by bringing her in tonight. Tests underway and we’re hoping we can take her home soon! ❤️❤️❤️
November 6, 2025 at 2:59 AM
We’ve managed to avoid the ER since Feb/March, but Amelia’s been a bit agitated with an elevated temp. She’s prone to more seizures when she’s too warm, so we’re being proactive by bringing her in tonight. Tests underway and we’re hoping we can take her home soon! ❤️❤️❤️
We visited Amelia’s grandpa today and stopped by the lovely Covington Community Park to explore a little bit. We found some pretty leaves to place by his headstone. 🍁
November 2, 2025 at 5:55 AM
We visited Amelia’s grandpa today and stopped by the lovely Covington Community Park to explore a little bit. We found some pretty leaves to place by his headstone. 🍁
Happy Halloween everyone! 🎃
November 1, 2025 at 1:36 AM
Happy Halloween everyone! 🎃
I will never, ever pass up an opportunity to share a pic of our Oliver dressed as nigiri sushi.
RIP Oliver. ❤️
RIP Oliver. ❤️
October 31, 2025 at 8:23 PM
I will never, ever pass up an opportunity to share a pic of our Oliver dressed as nigiri sushi.
RIP Oliver. ❤️
RIP Oliver. ❤️
Still using my Adobe course homework to spread Batten Disease awareness. This time: I used Illustrator to show what all of her meds are for.
October 29, 2025 at 10:28 PM
Still using my Adobe course homework to spread Batten Disease awareness. This time: I used Illustrator to show what all of her meds are for.
Yesterday, it was time for Amelia’s COVID booster and another appointment, then we enjoyed a sliver of sunshine over at Dune Peninsula.
October 29, 2025 at 12:48 AM
Yesterday, it was time for Amelia’s COVID booster and another appointment, then we enjoyed a sliver of sunshine over at Dune Peninsula.
Lots of stressful stuff happening on multiple levels, but I am enjoying my current lock screen.
October 26, 2025 at 10:50 PM
Lots of stressful stuff happening on multiple levels, but I am enjoying my current lock screen.
Today was Trunk-or-Treat time for our little orca!
And yes, indoor masking is still really important — especially for medically fragile apex predators!
And yes, indoor masking is still really important — especially for medically fragile apex predators!
October 26, 2025 at 1:43 AM
Today was Trunk-or-Treat time for our little orca!
And yes, indoor masking is still really important — especially for medically fragile apex predators!
And yes, indoor masking is still really important — especially for medically fragile apex predators!
Returned to the Bud Blancher Trail in Eatonville yesterday to catch some of the fall leaves. 🍁
October 25, 2025 at 3:40 AM
Returned to the Bud Blancher Trail in Eatonville yesterday to catch some of the fall leaves. 🍁
Still plugging away at a Photoshop certification course and my latest homework assignment called for a digital portfolio. So I opted for a gaming theme to work on some vector-based designs and pattern-building.
October 22, 2025 at 8:35 PM
Still plugging away at a Photoshop certification course and my latest homework assignment called for a digital portfolio. So I opted for a gaming theme to work on some vector-based designs and pattern-building.