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

14/02/2026

Lukas vs our little 20lb dog "Brody" when Lukas was 3 months old! The teeniest lil nugget 🥹❤️

12/02/2026

I kept Lukas home from school today because he has been puking all morning. I'm really hoping he isn't getting sick again. A lot of it has been mucus. 😣

Here's some pics from this week. ❤️

07/02/2026

Lately Lukas has been trying to pull himself up to stand 😳 he wheeled himself up to a char with rails on it in our kitchen the other day, grabbed onto a rail and pulled himself up and out of his wheelchair!

I am going to try and get him into an intensive PT again, but ultimately I'd love to get a gait trainer for him! I think this boy is ready to walk!! 🙏🏻😍

07/02/2026

We're kind of over this free trial of living in Alaska....but anyway 😵‍💫dad built an igloo for the kiddos! We got most of this snow about two weeks ago-but this was the first time I had taken Lukas out to play in it any. He had been sick but this week he seems to be feeling good!! He also had another successful day of school today! 🥰❤️

05/02/2026

Last night we had a late night ER trip for mister man because he tumbled face forward out of the high chair while daddy was taking the front of it off to get him out. He had quite the goose egg and I was certain he'd wake up today with swollen eyes. But he woke up this morning and it was almost totally gone! So off to school he went. He had a pretty good day other than a little seizure activity and ultimately falling asleep before the end of class again lol.

This boy keeps us hopping! 🥴🫣😅

04/02/2026

Today was a BIG win for Lukas! 💙👏

After being out sick, he had a really good day back at school and made it all the way through his full 3 hours! 🎉 We are really hoping this means we’re finally on the mend and he can get back into the routine of going regularly again.

He truly enjoys seeing his teachers and classmates, and it makes my heart so happy to see him getting back into the swing of things. 🥹

But let me tell you… when I picked him up today, he was NOT impressed 😂 He was so mad that his teacher woke him up to bring him out to me that he wouldn’t even make eye contact with her. Just straight-up attitude and silent treatment 🤣

He also got to spend about an hour in his stander today, and his teacher said he did GREAT! 🙌

We are so proud of him. One good day at a time. 💙💪

28/01/2026

When your little sister knows how to erk your nerves 😂 they may not seeom like they have a typical relationship, but trust me- they very much have a typical relationship. They are partners in crime but also fight something awful 😂

23/01/2026

Big shout out to my newest top fans! 💎

Jodie Goode, Charles Stanley, Michelle Merrick, Mandy-Jason Petefish, Crystal Gray, Fonda Powers, Bea DeLong, Patty Bussell, Patti VanHorn, Jamie Webb, Philip Gray Jr., Kara Hammer, Susie Johnson

Drop a comment to welcome them to our community,

23/01/2026

Big shout out to my new rising fans!

Kenedy Tate

23/01/2026

5 years ago today I had the crazy idea to start a page for our family & local community to follow Luke's medical journey. Who would've thought we'd reach to over 3,000 followers from all over the world, have countless videos with hundreds of thousands of views, or that I'd still be doing this 5 years later! Thank you all for being here and loving our special little guy! ❤️

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