Philip Palermo
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: gofund.me/e02c7708
- Back again — hoping our girl recovers swiftly. Batten disease still sucks.
- I would fund as many rare disease research efforts as possible — including all the Batten Disease programs. Our daughter WAS eligible for a possibly life-saving clinical trial until it was “deprioritized” due to funding issues and I don’t want others to experience that heartbreak.
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- It’s wild to me that this version exists, but I’m glad it does.
- Took Amelia on another outing yesterday afternoon. She was in a much better mood than our last trip! Her grandma got to join us for a quick stroll along the Bud Blancher Trail. We also spotted a bunch of bald eagles along the river and took a group photo with one.
- A bit of promising news: I’m highlighting recent milestones @collabchem.bsky.social has achieved in developing an enzyme replacement therapy for CLN1 Batten Disease, the type Amelia was born with. Funding remains a huge concern, but I want to celebrate these advancements as often as I can!
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- Been retired for half a decade, but Kam Chancellor still looks like someone I would absolutely not wanted to get hit by.
- Amelia is still on 20+ hours of BiPAP per day, but we’re trying to test her lungs a bit with about an hour a day with just a nasal cannula supplying some oxygen. Also: Go Hawks.
- Again, I know there’s so much awful stuff going on right now. But I still want to celebrate our Amelia. We’ve been slowly venturing outdoors again while still sticking to her 20+ hours of BiPAP lung support. Despite a lot of anger during the drive, she enjoyed the actual walk around Dune Peninsula!
- Is Copilot confusing Blitz, the Seahawks mascot with NFL Blitz, the video game?
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- Amelia is enjoying some scheduled time off of BiPAP support and dressed for the occasion! #GoHawks
- Time to check in on @erinbiba.bsky.social before I focus on the Seahawks game.
- “Oh, Amelia’s BiPAP machine is alarming because her respiratory rate is high, but she’s just having another seizure,” I casually said to Jenn as I went about adding almond milk to my decaf coffee. Batten Disease really alters the content and tone of our average conversations.
- 5AM and just troubleshooting some loud BiPAP alarms on Amelia’s new ventilator. I think I’ve made some progress and I’m thankful she’s comfortably sleeping through these LOUD alerts! Oh and Batten Disease sucks!
- Finally home. Lots to say soon, but for now: We’re thankful to return home with Amelia. As always, we’re grateful to the amazing Mary Bridge Children’s Hospital staff and to all of Amelia’s supporters! We appreciate you all! And yes our Christmas tree is still up. Haven’t been home all year!
- The longer I stay at a hospital, the more I want to fire up Theme Hospital, or its modern day equivalent, Two Point Hospital.
- Quack quack.
- Amelia’s had a good couple days followed by really rough, uncomfortable nights with possible stomach discomfort. Trying ways to ease pressure while ensuring she gets the BiPAP support she needs. Not sure what her new “normal” might be, but we’ll do our best to adjust!
- Do you see that dark blue section? The one labeled “No Treatment”? That’s where our Amelia is with her fatal CLN1 Batten Disease. We’ve seen firsthand how promising research can be sidelined by funding issues, so we’re thankful for any effort to raise awareness about these rare diseases.
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- Amelia spent time in her wheelchair today. Still making progress and we’re starting to talk with docs about goals to return home, including increased BiPAP support. Not sure if that’ll be her “new normal,” but encouraged we’re even at this stage! Oh and we met Lucy, another therapy dog yesterday!
- “Cleaning the gutters can happen whenever. The time for this clever lede is right now.”
- I know there’s a lot of awful news today, but I wanted to share that Amelia has been making more progress. She sat in Jenn’s lap for a bit! She’s on her home BiPAP machine and we’re trying to lower therapy frequency. Having some stomach issues, though. We also met the tiniest therapy dog, Gidget!
- Our amazing Amelia made some good progress today. She was able to transition to her at-home BiPAP and even spent some time off BiPAP support and with just supplemental oxygen via a nasal cannula. We hope she can keep her progress moving in the right direction so we can lower assistance even more.
- Tonies and an orange .
- With CES in full swing, I once again share my most useful piece of on-the-ground advice: Sometimes the condiments for the boxed lunches are at the very bottom. Don’t make the mistake I did and settle for a dry sandwich.
- Reading this while sitting in a Pediatric ICU is extra infuriating.
- Amelia’s made good progress today! X-ray shows increased aeration, though the lower left lung base is still collapsed. We’re trying lower BiPAP settings to see if she can handle it. Thankful for visitors and everyone’s support!
- If the Jaguars make the Super Bowl, I hope they hire Manny Jacinto for some fun marketing.
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- Go Amelia! But also: Go Hawks!
- Decent progress yesterday. But her docs clarified that they don’t think a breathing tube is worth the risk. They’d likely do it if we asked, but we’re placing most of our hope now in that she can recover enough to safely come off of full-time BiPAP support. Scary times, but we’re still hopeful.
- We’re so very thankful for those who are actively working on cures and/or therapies for Batten Disease, including the CLN1 type Amelia was born with.
- Reposted by Philip PalermoIt’s no guarantee but the first thing you should do if you see an outrageous story that’s just an image or screenshot or video with no link to a reputable source is to check the replies and see if someone is saying “that’s an AI fake.” And then don’t spread it either way because it’s not sourced.
- Amelia was calmer today, but her lungs may have closed again. Hoping chest PT helps. Docs spoke to us about possible intubation and breathing tube — and all the major risks involved. She came off of a ventilator 2 years ago. But her lungs are weaker now and there’s no guarantee she can do it again.
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- Elsewhere in this hospital, it sounds like a baby was born at very close to 11:59PM on Dec. 31st.
- Amelia’s worked so hard today. Good: She’s gradually needed less oxygen support and may have reflated a partially collapsed lung. Not so good: All that effort, and all the “gunk” she’s coughed up has left her agitated and nauseated. Hoping she can calm down and prevent any progress backsliding.
- We’re so thankful for the incredible support everyone has shown Amelia especially during her current hospital stay. To learn more about Batten Disease and groups that support affected families, consider visiting and even donating to the Batten Disease Support Research and Advocacy Foundation:
