Philip Palermo

How Batten disease parents can drive change through advocacy Columnist Cristina Vargas explains how speaking up and sharing your child's story can drive change in the rare disease community.

“Don’t underestimate the impact of your advocacy, even on the days when it feels like you’re shouting into the void.“

Cristina Vargas on Batten parents sharing their stories.

I feel like I’m shouting into the void A LOT. It’s disheartening, and frustrating. But it’s still vital.

Well that turned into an interesting game real fast.

Very useful knowledge and insights in this thread, even for the most well-intentioned parents of children with disabilities.

Amelia in her wheelchair at Kubota Garden in Seattle.

Amelia in her wheelchair at Kubota Garden in Seattle with her mom

Amelia in her wheelchair at Kubota Garden in Seattle with red leaves around her

Amelia in her wheelchair at Kubota Garden in Seattle with red leaves in the background

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!

She’s having a calmer night so far, so… fingers crossed.

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.

A before-and-after Photoshop of an NBA Highlights YouTube video thumbnail image. The before is the original image of 6’2” Steph Curry and 7’4” Victor Wembanyama. The altered version lowers Curry’s image to better reflect the height difference between the two.

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.

A before-and-after Photoshop of an NBA Highlights YouTube video thumbnail image. The before is the original image of 6’2” Steph Curry and 7’4” Victor Wembanyama. The altered version lowers Curry’s image to better reflect the height difference between the two.

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.

Could they be tanking regular search in the hopes people will shift to the ai one?

YouTube video by Kurzgesagt – In a Nutshell You're More Stressed Than Ever - Let's Change That

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.

YouTube video by Perimeter Institute for Theoretical Physics The End of the Universe Explained by Katie Mack | Cosmology 101 Episode 9

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!

Orcas passing Titlow Park

Orcas passing Titlow Park

Amelia at Titlow Park with the Tacoma Narrows Bridges in the background

A collage of photos of orcas passing Titlow Park

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.

I was not prepared for this back in high school when I visited the Philippines. I was at an SM Supermall in Manila and it felt like I was being followed (by very friendly people).

Orcas passing Titlow Park

Orcas passing Titlow Park

Amelia at Titlow Park with the Tacoma Narrows Bridges in the background

A collage of photos of orcas passing Titlow Park

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.

Congrats on the website, by the way.

Done.

A pixel art graphic of Amelia in her beach wheelchair.

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……

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.

Amelia lies in a hospital bed.

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.

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.

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?

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.

An overhead photo of Amelia on a leaf-filled trail

Amelia and her parents on a leaf-filled trail

An upward shot of trees

A photo of Isagani Palermo’s grave with flowers and fall leaves

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.