Help Sweet Sebastian Through His Hardest Fight

Sebastian’s Story: Our Brave Boy Needs Your Support

Hi, my name is Andrea and I’m the proud mom of a sweet, gentle, brave little boy named Sebastian.

Sebastian is 7 years old and has faced more challenges in his short life than most adults ever will.

He was born with a rare chromosome disorder called 15q11.2-13.1 duplication syndrome. It causes low muscle tone, global developmental delay, epilepsy, autism, and an intellectual disability. He is also non-verbal. He doesn’t use words to speak, but he communicates with us in the most beautiful ways—with his eyes, his hugs, his hand reaching out for reassurance. He pulls us close when he needs love, and that’s how we know what’s in his heart.

Since Sebastian was one, I knew something wasn’t right. He wasn’t meeting milestones—he struggled to sit, to walk, to speak—but I knew in my heart he was trying. He just needed extra help. He started early intervention and has been in PT, OT, and speech therapy ever since. He worked so hard, and slowly, we started seeing progress. He began to say words, use some sign language, and show more awareness.

And then, the seizures started.

At the end of 2021, I noticed him zoning out—his eyes blank, body still, completely unaware. These were focal seizures, and as they worsened, we started to lose the progress we had made. My sweet boy began to regress. His words faded. His interest dimmed. How could I help my baby?

We tried to get answers, but COVID delays held everything back. We couldn’t get an EEG until February 2023, and within just four days, he was diagnosed with epilepsy. From there, we were thrown into a storm of trial and error.

We’ve tried 7 seizure medications. At one point, Sebastian was on 14 tablets a day. It was overwhelming, and still, the seizures came. My heart broke every time. I reached a point where I couldn’t keep feeding my child so many pills, especially when nothing was working. Thankfully, the epilepsy clinic agreed. We began slowly weaning him off the ineffective medications, one by one, while carefully introducing new ones.

Sebastian suffers from:

• Focal seizures, where he blanks out, stares, or becomes unaware

• Tonic-clonic seizures, which cause full-body convulsions and loss of consciousness

• Atonic seizures, where his body suddenly goes limp and collapses

He already lives with low muscle tone, so these seizures make everyday life even more dangerous.

This past weekend, we lived through our worst nightmare. Sebastian had a 20-minute seizure. His oxygen dropped to 70%. He was unresponsive, pale, and limp in our arms. He was rushed to the hospital by ambulance, and in those terrifying minutes, I thought we were losing him. I will never forget that feeling.

Now, we’re at a crossroads: Sebastian is being evaluated for brain surgery. There is a 60–70% chance it could reduce or stop his seizures. It’s terrifying and hopeful all at once. The road ahead will include more tests, hospital stays, and a long recovery—but we’re doing everything we can to give him a better life.

To help us through this critical time, we’re asking for support.

We’re raising funds to:

• Purchase the Empatica Embrace2 seizure detection watch

• Buy the SAMi-3 seizure monitor (a camera that alerts us to seizures during sleep)

• Pay for the subscriptions needed to make these devices work (monthly services that keep him monitored in real-time)

• Cover travel expenses for hospital visits and surgery evaluations (gas, food, parking)

• Help cover therapy costs (his private OT and speech therapy are no longer covered)

• Prepare for possible nursing support or special equipment during his recovery

• Help us stay afloat financially, especially as I’ll need to take time off work for his surgery and recovery

• Cover basic needs while Brandon is temporarily off work due to lack of available hours

We’ve always tried to do everything on our own—but this last seizure showed us we can’t do this without help. We’re so scared of another close call.

Sebastian is a light in this world. He is kind, gentle, full of love, and stronger than words can express. His 12-year-old sister, Elaina, is his biggest fan. She sings to him, comforts him when he’s scared, and brings him joy when the days are hard.

We know not everyone can give, but even sharing this story or sending love means everything. You never expect to be the family who needs help—but here we are, holding onto hope, and asking for support.

Sebastian deserves safety. He deserves healing. And he deserves a future full of possibility.

Thank you for standing with our boy.

With all our love,

Andrea, Brandon, Elaina & Sebastian