Project Sebastian

06/01/2026

It is Batten disease awareness month! The first week of June is recognizes Batten disease awareness week in California on June 9. It is international Batten disease day for Los Angeles County California. We have a campaign all month about this horrible disease! If you want to help, please repost these videos during June. I totally appreciate your support and for the kids and the adults suffering from bat disease like Sebastian, they will appreciate it too. 

05/26/2026

Over the years, Project Sebastian has been about more than awareness.

It has been about survival, adaptation, caregiving, community, and finding ways to keep moving forward even during the hardest moments.

Today, I’m proud to share that I have officially published my first book:

THE CAREGIVER RESET
A Guide for Caregivers to Restore Strength, Balance, and Sanity

This book was not written from theory. It came from lived experience through Sebastian’s journey and the realities that many families in the rare disease and special needs communities face every single day.

Inside are simple, realistic resets designed to help caregivers reconnect with themselves physically and mentally — even if only for a few minutes at a time.

At the same time, I’m excited to announce the beginning of a new chapter for our radio show, The Rare Hour, where we will continue to bring awareness, resources, conversations, and real stories to the rare disease and caregiving communities.

This is only the beginning.

Thank you to everyone who has supported Project Sebastian throughout this journey. We hope these next steps continue helping families feel seen, supported, and less alone.

Link in the comments ⬇️⬇️⬇️

05/25/2026

“Today, we remember those who gave everything for others.
From our family at Project Sebastian, we wish everyone a meaningful and peaceful Memorial Day. 🇺🇸”

05/15/2026

https://www.hometownstation.com/santa-clarita-news/community-news/khts-radio-to-launch-the-rare-hour-disease-community-advocacy-show-hosted-by-chris-velona-594030

I'm super excited to make the jump to radio after 10 years in the podcast business. Time for a new chapter. Hope you can tune in!

KHTS Radio is set to debut a new weekly program focused on rare disease awareness, special-needs adv...

05/12/2026

https://fb.watch/H3q-0ZCnw_/

Mental Health week!! Check out our friends from Agape Village with an important message!

05/10/2026

Happy Mother’s Day 🌸
To all the moms, grandmas, stepmoms, caregivers, and women who show up every single day with love and strength — today is for you.

And for the rare disease and special-needs moms especially… you are warriors in ways most people will never fully understand. The patience, advocacy, sleepless nights, appointments, therapies, fear, hope, and unconditional love you carry is extraordinary.

I hope today brings a little peace, appreciation, and maybe even a moment to breathe. You deserve it.

05/04/2026

Here's a nice, quick take on the realities of rare disease, pre-trials, and trials if you ever get there. Thank you Carter's Challenge for sharing!!

02/08/2026

Sebastian once again defying all odds and made a full recovery after being a week in the hospital with debilitating seizures, extreme high fever, a UTI, sepsis and a failed and aborted attempt at a G-tube insertion. This kid is superhuman and pulled through smiling all the way to his favorite chair at our house. Huge shout out to the staff for their extreme due diligence and helping Sebastian. There’s not enough gratitude one can see in thanking a nurse. 👩‍⚕️💘💉Thanks to all of the prayers and the people that visited we won’t forget you.

02/05/2026

OK, so here’s an update on Sebastian‘s latest hospital stay. Since we checked in Friday, we’ve had multiple seizures on our way to get a G-tube. After postponing the G-tube insertion due to seizure activity, we finally got Sebastian to cooperate and was able to get the G-tube inserted on Tuesday. This procedure was done endoscopically with a camera and was done in under 30 minutes without a hitch. However, afterwards, Sebastian developed a bacterial infection and then became septic. He is currently fighting that right now and the antibiotics seem to be helping. The good news is that the G-tube feedings are going very well and his body is responding! Keep fighting son! We are all praying for strength!! 🙏💪👊
Here are some random pics. I’m sure some of you recognize them!