To those dealing with rare disease every day, we see you.

To those researching first-ever treatments and cures, we thank you.

To those with the means and desire to help fund miracles, we need you.

#BattenDisease #rarediseaseday2023

Rare Disease Day is coming soon, and the Rare Disease Day site has published my wife’s lovely write-up about our Amelia. Learn more about her story and how you can help at the link below!

#BattenDisease #RareDisease #RareDiseaseDay #RareDiseases

https://www.rarediseaseday.org/heroes/batten-disease-warrior/

“Throughout this journey, we try to walk the line between grief for what was lost and what will never be, and what we still have to be thankful for.”

— A quote from Jennifer Palermo, my wife, who wrote about our daughter Amelia for Rare Disease Day.

#battendisease #RareDisease #rarediseaseday2023

https://t.co/fECK7d7c5f

The cost of a single 30-second ad could also enable researchers to bring potential CLN1 #BattenDisease treatments closer to clinical trial stage — and possibly save my daughter’s life and the lives of other children like her.

#RareDisease #SuperBowl  #ultrararedisease

Content Warning: Child experiencing seizures.

Not my usual Amelia post, but these are dacrystic seizures. They can cause involuntary crying and tears. She might also feel sad, but she can’t tell us.

Another reason why #BattenDisease is horrible and why we need funding for clinical trials NOW. #clinicaltrials #cln1 #raredisease #rarediseases

Amelia has these types of “crying” seizures from time to time and they are absolutely gut-wrenching to watch.

We need funding for CLN1 #BattenDisease research NOW.

Source: https://instagram.com/cln1hopeforacure

Our girl made some big strides today! She spent most of Wednesday without needing extra oxygen and hasn’t had a fever in a little while. If she keeps this up, she could go home Thursday. Keep your fingers crossed! Pneumonia can be so challenging for kiddos with #BattenDisease.

Still here. Amelia’s working on her oxygen levels, but still needs a supplemental supply. Docs are pleased with her progress, though. We’ve been at the hospital for 75% of the year so far. #BattenDisease makes recovery from more common issues that much harder. 🤬

Happy New Year to you all! In case you’re curious, our resolutions haven’t changed: Keep fighting for Amelia! 🎆 🎇 #BattenDisease

2022:
- Adapted & (dare I say) kinda thrived professionally
- Slept on Amelia’s floor all year to keep overnight watch (monitored her pulse oximeter and had a suction machine handy in case she woke up coughing and/or choking)
- Sold most of my collectibles to help build up Amelia’s savings account
- Spread #BattenDisease awareness
- Searched for research funding
- Hoped, prayed

2023: Rinse, repeat.

Doing what I can to spread the word. #BattenDisease

Hey all! I have a personal YouTube channel! It’s a take on those relaxation, help-you-sleep channels. I’m taking a slightly different approach: combining original music with footage from beautiful games like #horizonzerodawn on the #ps5. Nothing huge, but hoping I can draw enough attention to start monetizing and to build up our savings (#BattenDisease medical expenses are NOT cheap!).

Please consider subscribing and maybe even letting others know! Thanks!

https://youtube.com/@pressxtochill

Stole my wife’s photo to highlight all the beads Amelia has earned over the years through the Beads of Courage program. Various medical procedures and events lead to specific beads, whether it’s a poke for a vaccine, surgery, different tests, or being discharged from the hospital. And as a kiddo with the ultrarare CLN1 type of #BattenDisease, she’s certainly earned more than a few!