Love for Lukas

  • Home
  • Love for Lukas

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

Lukas had so much fun on his field trip yesterday! 🥰
04/10/2025

Lukas had so much fun on his field trip yesterday! 🥰

Lukas is going on his first ever field trip to the pumpkin patch today! Mama gets to join him! 🧡
03/10/2025

Lukas is going on his first ever field trip to the pumpkin patch today! Mama gets to join him! 🧡

Yesterday we went to UVA for Luke's orthopedic follow up. He had a hip xray that confirmed everything was the same as it...
01/10/2025

Yesterday we went to UVA for Luke's orthopedic follow up. He had a hip xray that confirmed everything was the same as it has been, so no surgery needed for now. Then we got him fitted for new AFOs. They're going to be so cute!

Tonight we leave for Norfolk again, his appointment at CHKD is at 10 tomorrow.

He is supposed to have his scope procedure Nov 7th, but anesthesia is not wanting to approve it until they get notes/speak to his neurologist. I'm assuming because it could be extra dangerous with all the seizure activity he's been having. But this scope could give us much needed answers about his GI tract. So prayers for this situation are appreciated.

Please pray for safe travels tonight/tomorrow. ❤️

With one of our cars breaking down and some other bills that came out last week money is tight. I really do not like to ...
30/09/2025

With one of our cars breaking down and some other bills that came out last week money is tight.

I really do not like to post this and I try not to ask for donations on here anymore; but if anyone feels led to help with getting Lukas back to CHKD again Thursday we would appreciate any help!

We didn't plan for this appointment because it was just scheduled yesterday but it is with pain & palliative care who he really needs to see again. Typically we would have scheduled it on the same day as his GI appointment (yesterday) so we would get it all done in one trip, but unfortunately it wasn't able to work out that way this time. 😞

My Venmo, cashapp & PayPal will be in the comments. ❤️

Hi friends ❤️We left our house at 4AM this morning to head to Norfolk for Luke's GI appointment this morning at CHKD. We...
30/09/2025

Hi friends ❤️

We left our house at 4AM this morning to head to Norfolk for Luke's GI appointment this morning at CHKD.

We made it 20 minutes up the road & our car broke down. Luckily my parents were able to bring our other vehicle to us and we got back on the road- still making it to his appointment in time by the grace of God.

Unfortunately we left the appointment with some unsettling news. He has lost 2lbs since we were there in June, which is about 15% of his total body weight. A HUGE unexplained weight loss, because he hasn't been sick.

We have to do another stool sample- but this time they're checking for malabsorption. Which after researching it when left, totally fits the criteria.

Then we go back November 7th to see our friends in the OR for a scope of his intestines.

The sad reality is we are facing another admission. If we can't get it figured out during an admission then the next step is placing a picc line for TPN.

Tonight when I was doing his medicine through his Gtube, it all started leaking out of his stomach. I changed his tube but it still continued to happen. I called the On call line, but we are thinking that it's a button size issue considering he's lost so much weight.

Tomorrow we have to go to UVA to see ortho. Hopefully we can see about getting him fitted for new AFO braces since they are working with getting him to bear weight on his legs at school.

We have to go all the way back to Norfolk again Thursday to see pain & palliative care and to take the stool sample back, because it has to be taken back to them within 36 hours of me collecting it so I may as well take care of that while we're back down there. If we can find a cheap deal, we might try to get a hotel Wednesday night because driving down and back all in one day today was extremely exhausting for us all. (Its a 4.5hr trip one way.)

Please keep Lukas in your prayers ❤️

Just popping in to say hi! 👋🏼 🖤🧡 🎃 Lukas has a follow up with pain & pallative care at CHKD this coming Monday, so we wi...
24/09/2025

Just popping in to say hi! 👋🏼 🖤🧡 🎃

Lukas has a follow up with pain & pallative care at CHKD this coming Monday, so we will be heading to norfolk on Sunday night. Please pray for safe travels! This appointment is to follow up on his dysautonomia.

He is actually having a tough day today and keeping his legs and arms really tense. He also seemed really out of it this morning when he first woke up. I think last night might have been pretty active with seizure activity for him. But he was still a happy guy and excited for school! ❤️

11/09/2025

Being a young mom to a child with medical complexities is something I never imagined for my life. Some days it feels like I’m drowning in appointments, bills, and worry. Instead of playgrounds and playdates, it’s waiting rooms and procedures. Instead of carefree moments, it’s learning to read monitors, medications, and signs of distress.

It’s isolating. Friends my age don’t always understand why I can’t just “get a sitter” or why I’m too exhausted to show up. Sometimes I don’t even recognize myself anymore—I’m just the mom holding it all together for my child, even when inside I’m falling apart.

But here’s what I know: my love for my baby runs deeper than the exhaustion, the fear, the loneliness. I would do it all a thousand times over just to see their smile.

If you’re another parent walking this hard, messy road—you’re not weak for struggling. You’re human. And you’re not alone.

Luke is off to his first day of his 3rd and final year of PreK! 💚
28/08/2025

Luke is off to his first day of his 3rd and final year of PreK! 💚

"Why is he happy?He cannot talk,He doesn’t know how to dress himself,Or draw, or use a spoon.He has no friends.Not a sin...
21/08/2025

"Why is he happy?

He cannot talk,
He doesn’t know how to dress himself,
Or draw, or use a spoon.
He has no friends.
Not a single one.

Yet – he is happy.
With no expectations.

He doesn’t request to go to the zoo,
Or beg for birthday parties.
He asks for nothing, wants for nothing.

He giggles at lights,
Dances in the rain,
Flaps to the rhythm of birdsong.

He is present
In a way I struggle to be –
Outside the metrics we’re taught to measure by.

No goals. No trophies. No milestones to chase.
Just now.
Not reaching for meaning –
Living it.
Moment by unfiltered moment.

And still I ache.
Not because he is sad,
But because… he isn’t.

I see the doors he cannot open,
While he remains blissfully unaware that they exist.

He doesn’t even know what he’s “missing.”

I wonder:
If he could ride a bike, would he know the thrill of coasting downhill?
If he could read, would stories carry him to faraway places?

Would more ability bring more joy?

Or is that my projection –
The paradox of parenting:
To assume that more must mean better?
To grieve on behalf of someone else’s content.

So maybe it’s not his potential I mourn,
But the quiet dismantling of everything I believed happiness required:
Progress, productivity, doing.

Because today,
He smiles.

No football. No bike. No words.
No hunger for achievement.
No map to follow.

Just the warmth of sun on his face,
And the quiet peace of being enough.

Joy – unmeasured –
Without knowing
What he “should” be.

And in that,
Perhaps
He is freer
Than we ever will be."

❤️

-zak blackney.

18/08/2025

Hey friends 🙌🏼 good morning!! Lukas says hello! Watch til the end for the cutest giggles!! 🥰

I am curious for my other coffin Siris moms and dads out there... do any of your children struggle with muscle stiffness? I don't know if that's what this is or if it's neurological .. I plan to speak with his neuro about it next week at his appointment. He is already on clonidine and gabepentin which do seem to help him ease up some but he usually keeps his legs stiff.

We are also working on trying to get back into physical therapy other than just the therapy he gets at school. So if anyone semi local or local has private pediatric PT recommendations please let me know! Ty! ❤️

Also look what this boy did yesterday!!! He sat up completely unassisted for over a minute for the first time ever at 4....
22/06/2025

Also look what this boy did yesterday!!! He sat up completely unassisted for over a minute for the first time ever at 4.5 years old!!!

Lukas had a GI appointment at CHKD Monday. He weighed in at 22lbs!!!! He's gained 2lbs since we were there in the early ...
22/06/2025

Lukas had a GI appointment at CHKD Monday. He weighed in at 22lbs!!!! He's gained 2lbs since we were there in the early spring. That's huge for him!

He upgraded his wheelchair this week, too. He's loving the bigger wheels!

Address


Website

Alerts

Be the first to know and let us send you an email when Love for Lukas posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

  • Want your practice to be the top-listed Clinic?

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram