Love for Lukas

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Love for Lukas A little boy living life with the SMARCA4 variant of Coffin Siris Syndrome & a 19p13.2 microdeletion

His first Christmas stuffie was bigger than he was. 🥹
01/12/2025

His first Christmas stuffie was bigger than he was. 🥹

I'll be sharing throwback pics of Luke as we approach his birthday. This hat in the NICU dubbed him my "baby yoda" 💚
25/11/2025

I'll be sharing throwback pics of Luke as we approach his birthday. This hat in the NICU dubbed him my "baby yoda" 💚

Next week Lukas turns 5! Five years ago, the thought of this milestone felt like a miracle, and every day with him since...
23/11/2025

Next week Lukas turns 5! Five years ago, the thought of this milestone felt like a miracle, and every day with him since has been a gift we never take for granted.

During my pregnancy, we were told he had less than a 20% chance of survival. At just 26 weeks, we were admitted to UVA and almost lost him. Born at 35 weeks but severely growth restricted—the size of a 29-weeker and weighing only 2 lbs—Lukas started his life fighting.

At 7 weeks old, he was diagnosed with Coffin-Siris Syndrome (CSS). Since then, he has faced mountains of obstacles with strength and spirit:
• Epilepsy
• Dystonia & Dysautonomia
• Severe feeding intolerance, making him 100% G-tube reliant and much more.

Lukas has consistently defied every single prognosis and limitation the doctors set for him. He has climbed mountains they said he would never reach and proven that true strength comes in the smallest packages.

We are so unbelievably thankful for these five years with our tenacious, loving boy. He is the definition of a fighter, and his life is a testament to hope and perseverance. We are praying for many, many more wonderful years filled with his light.

Please join us in sending him a big birthday wish! 🎉

23/11/2025

Trigger warning. ⚠️ "absent seizure" activity.

Lukas has been having a LOT of absent seizures lately, including at school. He has been sent home recently from school to days in a row for seizures, which has never happened in the 3 years he's been in the preK program. 😔

I have reached out to his neurologist- but until we get back in with her to try and get this stuff under better control again, I'd like to get him some sort of monitor to wear, mostly at night, that can monitor his vitals or some sort of seizure monitor.

Does anyone have any suggestions?

🇺🇸 happy Veterans Day! ❤️So thankful for all the service men and women who put their lives on the line for our freedom a...
11/11/2025

🇺🇸 happy Veterans Day! ❤️
So thankful for all the service men and women who put their lives on the line for our freedom and safety!

Throwback photo to 4th of July!

Luke's appointment yesterday went well, he actually has gained a few ounces! But we think we found the culprit of the fevers. A double ear infection! 😩 so an antibiotic for the next 7 days & if the fevers continue after that we will go back for bloodwork etc.

He did make it all day at school yesterday! Hopefully today will be good for him, too! 🥰

Unfortunately Luke's procedure last week had to be cancelled. For the last few weeks, he keeps spiking random fevers. No...
10/11/2025

Unfortunately Luke's procedure last week had to be cancelled. For the last few weeks, he keeps spiking random fevers. No other symptoms, just a fever. He was sent home early from school every day he went last week because of it. He goes to his P*P this afternoon so that we can discuss that..

The procedure was rescheduled for December 26th. Yep, the day after Christmas. 🫠 but we will make it work.

We have a lot going on right now, I haven't been paid since September and things are hard. If you don't mind to keep us in your prayers we'd appreciate it. We will overcome this bump! ❤️

💜 November is Epilepsy Awareness Month 💜This month hits close to home for us. Our amazing son, Lukas, lives with epileps...
10/11/2025

💜 November is Epilepsy Awareness Month 💜

This month hits close to home for us. Our amazing son, Lukas, lives with epilepsy — a condition that affects him every single day in ways most people never see.

Unless you’ve experienced it, it’s hard to explain the fear of holding your lifeless child in your arms after a tonic-clonic seizure — watching, praying, waiting for them to come back to you. Those moments stay with you forever.

What most don’t realize is that epilepsy isn’t just the seizures we can see. There’s constant electrical activity firing in Lukas’s brain, battles being fought silently every moment of every day. To help control it, he has to take three medications daily, each with its own side effects, but he never lets it break his spirit.

Lukas is stronger than anyone I know. He fights every single day, and through it all, he smiles, he laughs, and he reminds us what true courage looks like. 💜

We love you endlessly, Lukas — and we’ll keep spreading awareness and hope until there’s a cure.


Disabilities don't stop him...it just gives him a cooler ride 😎🏎️ Wheelchair-Bella's BumbasRacecar design and build- Mim...
31/10/2025

Disabilities don't stop him...it just gives him a cooler ride 😎🏎️

Wheelchair-Bella's Bumbas
Racecar design and build- Mimi & pop pop!

30/10/2025

Just got our pre op call. Lukas goes into the OR next Friday at 9AM. We will be heading back to Norfolk Thursday afternoon and staying in a hotel (hopefully we can find a decent priced one) and then coming back home Friday after his procedure as long as all goes well.

Last time he went under anesthesia he did not respond very well. Please keep him in your prayers next week that all will go well and hopefully we get some answers. ❤️

Coming to a hotwheels track near you... 🏎️
22/10/2025

Coming to a hotwheels track near you... 🏎️

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