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
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.
Reposted by Philip Palermo
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.
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.
Literally just gave my daughter ibuprofen as she deals w/ an ear infection. For some with Batten Disease like Amelia, a “minor” ear infection can raise her body temp, which lowers her seizure threshold and leads to more frequent seizures. Ibuprofen absolutely helps her get through the day safer.
JD Vance calls ibuprofen "useless medication" and implies it's not "necessary, safe and effective."
November 12, 2025 at 10:58 PM
Literally just gave my daughter ibuprofen as she deals w/ an ear infection. For some with Batten Disease like Amelia, a “minor” ear infection can raise her body temp, which lowers her seizure threshold and leads to more frequent seizures. Ibuprofen absolutely helps her get through the day safer.
It’s hard to describe the stress of caring for a terminally ill child. The steps we take to ensure her comfort and happiness change almost daily. And while we know that stress is wrecking our health, we kind of push that aside because there’s much more important stuff to worry about at the moment.
You're More Stressed Than Ever - Let's Change That
YouTube video by Kurzgesagt – In a Nutshell
youtu.be
November 12, 2025 at 3:27 AM
It’s hard to describe the stress of caring for a terminally ill child. The steps we take to ensure her comfort and happiness change almost daily. And while we know that stress is wrecking our health, we kind of push that aside because there’s much more important stuff to worry about at the moment.
Fascinating potential. I know it’s very farfetched, but I would love the ability to plug PSVR 2 into this, clip it onto my belt and have a somewhat clunky, but pseudo-untethered VR experience.
In Theory: could Sony's next-gen handheld run PS4, PS5 and even select PS6 games? The spec leaks offer enticing possibilities: www.digitalfoundry.net/features/in-...
In Theory: Could Sony's next-gen handheld run PS4, PS5 and even PS6 games?
Back compat paired with forward looking features could be a game-changer.
www.digitalfoundry.net
November 11, 2025 at 11:23 PM
Fascinating potential. I know it’s very farfetched, but I would love the ability to plug PSVR 2 into this, clip it onto my belt and have a somewhat clunky, but pseudo-untethered VR experience.
On a day where Amelia’s saliva secretions kept her uncomfortably awake til 6AM, most national news filled me with disappointment, and I sent out my 227th job application, I didn’t intend to cap it off by revisiting @astrokatie.com ‘s description of the heat death of the universe.
But here we are!
But here we are!
The End of the Universe Explained by Katie Mack | Cosmology 101 Episode 9
YouTube video by Perimeter Institute for Theoretical Physics
youtu.be
November 11, 2025 at 8:17 AM
On a day where Amelia’s saliva secretions kept her uncomfortably awake til 6AM, most national news filled me with disappointment, and I sent out my 227th job application, I didn’t intend to cap it off by revisiting @astrokatie.com ‘s description of the heat death of the universe.
But here we are!
But here we are!
Reposted by Philip Palermo
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.
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!
I was very pleasantly surprised by Halo 4 at the time. Presentation seemed excellent given the hardware and I really enjoyed the music direction. Ending was emotionally satisfying too. Left me cautiously optimistic about the future……
Talking Point: Exactly 13 Years Later, How Are You Feeling About Halo 4 These Days? (Repost)
Talking Point: Exactly 13 Years Later, How Are You Feeling About Halo 4 These Days?
Where does it rank in terms of Halo games for you?
www.purexbox.com
November 6, 2025 at 10:41 PM
I was very pleasantly surprised by Halo 4 at the time. Presentation seemed excellent given the hardware and I really enjoyed the music direction. Ending was emotionally satisfying too. Left me cautiously optimistic about the future……
Quick update: Our girl is safely home after a trip to the ER for some increased agitation, elevated temperature, and increased seizure activity. Focusing on a possible ear infection. We’re relieved it wasn’t more serious, but it also highlights the challenges medically fragile kids face.
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 10:28 PM
Quick update: Our girl is safely home after a trip to the ER for some increased agitation, elevated temperature, and increased seizure activity. Focusing on a possible ear infection. We’re relieved it wasn’t more serious, but it also highlights the challenges medically fragile kids face.
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! ❤️❤️❤️
A year since I was laid off, the hunt for stable, remote income continues. Toughest, most frustrating job hunt I’ve ever had. 225+ apps so far, many for roles I’m way overqualified for, but so are many other applicants. Still fighting for our terminally ill child and not giving up anytime soon.
November 4, 2025 at 2:06 AM
A year since I was laid off, the hunt for stable, remote income continues. Toughest, most frustrating job hunt I’ve ever had. 225+ apps so far, many for roles I’m way overqualified for, but so are many other applicants. Still fighting for our terminally ill child and not giving up anytime soon.
Update: Today, she managed about 3.5 hours before starting to scream inconsolably. And I screamed an obscenity at a random wall.
I hate Batten Disease so much.
I hate Batten Disease so much.
It’s wild how stressful bedtime can be. Amelia’s Batten Disease can cause her to get enraged before bed, even with a lot of sleep meds. It can be a struggle to get her comfy and calm enough that she finally sleeps. Plus, the crying can cause her O2 level to tank, so we have to pop on some oxygen.
November 3, 2025 at 3:55 PM
Update: Today, she managed about 3.5 hours before starting to scream inconsolably. And I screamed an obscenity at a random wall.
I hate Batten Disease so much.
I hate Batten Disease so much.
Mowing the lawn with my N95 on has been a game-changer for my allergies.
N95s can prevent more than just Covid!
They stop colds, flus and other airborne illness.
They’re also highly effective against pollen, pollution, wildfire smoke and environmental triggers.
Many maskers haven’t been sick in years.
Respirators are pretty amazing.
They stop colds, flus and other airborne illness.
They’re also highly effective against pollen, pollution, wildfire smoke and environmental triggers.
Many maskers haven’t been sick in years.
Respirators are pretty amazing.
November 3, 2025 at 8:54 AM
Mowing the lawn with my N95 on has been a game-changer for my allergies.
Anyone starting to insta-block profiles deliberately trying to pass AI videos off as real news or eyewitness footage?
November 3, 2025 at 6:03 AM
Anyone starting to insta-block profiles deliberately trying to pass AI videos off as real news or eyewitness footage?
Sad to hear that J64, a young calf we may have photographed earlier this year has been missing from more recent sightings and may be deceased.
We took Amelia out to Dune Peninsula in Tacoma today to search for the J pod (a group of endangered Southern Resident orcas) out exploring Puget Sound. They’ve got a newborn calf, so that may have been one of the many we saw today!
📸: iPhone 16 Pro shot through binoculars
📸: iPhone 16 Pro shot through binoculars
November 3, 2025 at 2:01 AM
Sad to hear that J64, a young calf we may have photographed earlier this year has been missing from more recent sightings and may be deceased.
Yeah, I don’t know how the PNW would’ve handled losing like that.
The Blue Jays made sure to lose that World Series in a way that would’ve otherwise happened to the Mariners and collapsed the entire city of Seattle. Respect.
November 2, 2025 at 7:19 AM
Yeah, I don’t know how the PNW would’ve handled losing like that.
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. 🍁
It’s wild how stressful bedtime can be. Amelia’s Batten Disease can cause her to get enraged before bed, even with a lot of sleep meds. It can be a struggle to get her comfy and calm enough that she finally sleeps. Plus, the crying can cause her O2 level to tank, so we have to pop on some oxygen.
November 1, 2025 at 11:38 AM
It’s wild how stressful bedtime can be. Amelia’s Batten Disease can cause her to get enraged before bed, even with a lot of sleep meds. It can be a struggle to get her comfy and calm enough that she finally sleeps. Plus, the crying can cause her O2 level to tank, so we have to pop on some oxygen.
Serious question: How do I get badly needed Batten Disease research funding on Billie Eilish’s radar????
November 1, 2025 at 6:44 AM
Serious question: How do I get badly needed Batten Disease research funding on Billie Eilish’s radar????
“Sexy Converting .wma Files in Apple Music”
Your Halloween costume is the word “Sexy” followed by the last thing you Googled.
I’m sexy federal minimum requirements for nuclear containment vessels.
I’m sexy federal minimum requirements for nuclear containment vessels.
November 1, 2025 at 5:50 AM
“Sexy Converting .wma Files in Apple Music”
Reposted by Philip Palermo
I demand photos of your costumed pets!
I’ll go first.
Calvin and Hobbes but goofy dogs.
I’ll go first.
Calvin and Hobbes but goofy dogs.
October 31, 2025 at 5:36 PM
I demand photos of your costumed pets!
I’ll go first.
Calvin and Hobbes but goofy dogs.
I’ll go first.
Calvin and Hobbes but goofy dogs.
Happy Halloween everyone! 🎃
November 1, 2025 at 1:36 AM
Happy Halloween everyone! 🎃