Schizencephaly Awareness

07/06/2026

06/15/2026

05/19/2026

💚💜 Celebrating Schizencephaly Awareness Day — May 19 💜💚

Today we celebrate strength, resilience, inclusion, and the incredible warriors living with Schizencephaly.
We honor every milestone, every voice, every caregiver, and every family walking this journey with courage and love.

And a very special 💜💚
🎉 Happy 26th Birthday to Noah Dennis! 🎉
Your light, strength, and spirit inspire more people than you know.

Rare does not mean invisible.
Different does not mean less.
Awareness matters. Love matters. Community matters.

05/18/2026

We fell in love with Julian and welcomed him into our family knowing his diagnosis. When he was just a year old, some incredible doctors found a cleft in his left frontal lobe. Since then, we’ve been right by his side through years of speech and occupational therapy. While he works through some processing challenges and emotional control at school, he handles it all with such grace. Last year brought a new hurdle when he started having seizures at age ten, but we’re managing those well with medication. He’s a deeply sensitive and kind soul who hasn’t let anything slow him down—he’s still out there playing basketball every chance he gets.

05/18/2026

My daughter Kylie lived with Schizencephaly, a rare neurological condition that shaped so much of her life — and ours. From the beginning, life looked different for her. There were challenges, therapies, hospital visits, uncertainties, and moments of exhaustion that felt impossible to explain to people outside the special needs world. But there was also joy. So much joy.

Kylie taught our family how to celebrate things others might overlook. She taught us patience, perspective, unconditional love, and how precious even the smallest moments can be. She had a smile, a spirit, and a presence that could soften even the hardest days. She was deeply loved not only by me, but by her dad and her brother as well, and the bond they shared with her will always remain part of who they are.

Loving a child with complex needs means living in two worlds at once. You become fiercely protective while also grieving the things your child may never experience. And somehow, you learn to hold both truths at the same time without loving them any less exactly as they are.

We lost Kylie three years ago, just shy of her 18th birthday. Yesterday, she would have turned 21. Even now, it is hard to put into words the depth of missing her. The grief comes in waves — sometimes quiet, sometimes overwhelming. I still catch myself wondering what her life may have looked like, what milestones we might have shared, and what kinds of mother-daughter moments we would be experiencing today. But more than anything, I simply wish she was here.

At the same time, we will always be grateful beyond words that we were blessed to have Kylie for as long as we did. She changed our lives forever, and despite the hardships, we would choose her every single time. She was deeply loved, and she continues to be deeply missed every day.

Schizencephaly is rare, but the families living it are real. The love is real. The sacrifices are real. The exhaustion is real. And so is the beauty that exists within these lives.

Today, I share Kylie’s name because she mattered. She still matters. And I hope by sharing her story, someone else navigating this journey feels a little less alone. 💜

05/18/2026

Mom Beck says:

We fell in love with these two sweet little faces in 2015 and jumped right into the adoption process. We had no clue what schizencephaly was but we knew it wasn’t going to stop us or them! It took 11 months and a medical expedite until I was granted permission to hop on a plane and to complete their adoption and bring our boys home.

I knew from the moment I was in the same room as them that nothing was going to slow them down. They have always been happy, sweet, loving and thankful boys. They truly are such a gift to our family!

Rowen has had seizures since before he came home and they had been mostly under control. He had a rough patch this last winter and required some time in the hospital but we got him on a better medication routine and he is back to himself now! He also struggles with food and drug allergies, making it even harder to find the right medications to help him. Rowen loves to draw, play football and baseball, he is obsessed with WWE and loves going to school.

Rylen struggles more so with his speech and has a lot more weakness all around than Rowen. Just like his twin brother, Rylen also loves to draw, play baseball and football and is also obsessed with WWE.

They are now 12 years old and we have been told to expect them to always need us. We are perfectly fine with that and look forward to the many years with these boys by our side. They also have 4 older siblings, so they are well loved! 🥰

We’ve all experienced a pretty rough last 1.5-2 years and are trying to find our normal once again. From medical to personal and everything in between. We are a strong family unit and we will get by. 💜💚

05/18/2026

Schizencephaly Awareness Day is — May 19 💚💜

Rare diagnosis. Extraordinary strength.
Tomorrow we recognize the warriors, families, caregivers, and advocates living with Schizencephaly — a rare brain malformation often connected with cerebral palsy, epilepsy, developmental challenges, and incredible resilience.

💚 Green represents Cerebral Palsy
💜 Purple represents Epilepsy

Awareness creates understanding.
Understanding creates inclusion.
And inclusion changes lives.

05/05/2026

From Mandie.
We adopted our son knowing the diagnosis. Julian at the age of 1 thanks to amazing doctors who ordered an MRI and sliced the image just right to see that he has a cleft in the left frontal lobe located. He was delayed in speech and went through three years of speech and OT.He has an IEP do to his processing speed. It wasn’t until last year at 10 that he started having . We managed those with medication. He is a very sensitive kid but overall is still active and loves .

Happy day