Schizencephaly Awareness

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

05/05/2026

From a Schizencephaly Awareness mama...

This is my daughter Brinley she is 7 turning 8 this August she has unilateral open lip schizencephaly which was found around 24 weeks while I was pregnant with her they said it was just our luck of the draw and sometimes these things happen. She has epilepsy, hydrocephalus with a vp shunt and a feeding tube. She is graduating kindergarten in just two weeks.

05/03/2026

Alyssia Joanne - now 14 years of age. She has bi-lateral schizencephaly. Diagnosed at 18 months of age. It took a long time for diagnosis, going through test after test. First, it was her mama had caught an infection whilst pregnant, then it was genetic, then it was Alyssia had a stroke whilst in the womb, then it was undetermined. We still don’t know the whys, and do you know what? It doesn’t matter! Alyssia, has the most beautiful smile, and laughs daily, which is infectious. She is our angel on earth. She cannot speak the words but shows us every day her love. She has taught us patience, consideration, fierce loyalty and a determination to give her the best life we possibly can.
She has not been without her issues throughout her journey, but she’s fought them head on and she is absolutely a warrior princess!
From Alyssia’s nan and family, from South Wales, UK x

05/03/2026

What a sweetheart!

Jett is 4 and has unilateral open lip Schizencephaly. Due to this he lives with epilepsy, optic nerve hyperplasia, and autism. He has had multiple brain surgeries and continues to be a fighter. He works hard in physical therapy, occupational therapy, speech and feeding therapy. Though he cannot talk yet (but working on it and says dada and mama), he is the happiest little boy. He continues each day with resilience and determination.
Schizencephaly Awareness

05/02/2026

Loving all these stories!

My son Matthew was diagnosed with Schizencephaly prior to his adoption at eight and a half months old. Now, at 22 years old, Matthew continues to amaze us with his personality and love for life. Although he has physical limitations and cannot walk, sit up, or talk, and requires total assistance with mobility and daily activities, Matthew's love for life is inspiring! Through his earlier therapies and my role as his full-time caregiver and mother, he has made a lot of progress and remains a joy in our lives. 💚💜 (picture of Matthew below)

05/01/2026

Sharing amazing stories about schizencephaly.
Ally Jo is absolutely adorable.

Grandma says:
This is my beautiful granddaughter Ally Jo. She was born three months premature and spent 4 months in the NICU. We knew before birth that she had hydrocephalus but she was diagnosed with Schizencephaly at birth. She is missing half of her brain. Her mom was a single mom and so I had the privilege to walk this journey with her. When we were given the diagnosis, we read everything we could about Schizencephaly. We were told all the things she wouldn’t be able to do. Her mom and I finally looked at each other and said we have to stop. We just need to put it in God’s hands. I’m not going to lie, it was a tough 4 months in the NICU. She had her first surgery on her brain at 2 weeks old. Ally is now 11 years old. She has had five surgeries in her short life. She has had many wonderful therapists who have helped her at every step. She is very tiny for her age but boy is she mighty!!! This girl has been the biggest blessing to our family! She is amazing! And truly a little miracle. All those things they said she wouldn’t do?! Ha!! She has shown them! She walks, she talks, she will tell you exactly what she thinks or wants, she loves to sing, she loves books, she knows her ABCs, their sounds, and how to count, she knows her animals and their sounds, she knows SO many things, she can work a phone or iPad better then me, she eats puréed foods, she is the happiest kid, her laugh is contagious, and anyone who meets her immediately falls in love with her. I love that you are sharing stories!! We wanted to share ours in hopes that when someone else receives this diagnosis, they can research and find these stories and not all the horror stories. Yes, it’s a scary diagnosis, but our Ally is one of the best things that ever happened to our family!! And just because the doctors say they may not be able to do something, doesn’t mean they won’t!!! Ally is living proof!!

04/29/2026

May 19 —is Schizencephaly Awareness Day
Awareness comes from stories.
Starting May 1, Schizencephaly Awareness will be sharing real stories from individuals and families living with schizencephaly—across all ages, all walks of life.
If schizencephaly has touched your life—whether it’s your own journey or someone you love—we invite you to share your story.
Raw. Real. Unfiltered.
Throughout May, we’ll be resharing stories to help people truly see: the strength, the challenges, the reality, the resilience.
Your voice can educate, connect, and change how this condition is understood.
Drop your story below, tag us, message us, or share to our page for a reshare to be featured starting May 1.
We’re listening. 💜

02/28/2026

For the 14th consecutive year, Friendship Circle is holding the Great Bike Giveaway, an annual campaign that strives to provide as many bikes as possible to children and teens with special needs. 

01/27/2026

12/07/2025

“Don’t let your child’s diagnosis become your personality”

It is something that is said often, given as advice.

That advice is unrealistic.

Hearing your child’s diagnosis is life altering, it changes everything you thought you knew before you heard those words.

It changes how you view the world and what you once thought was important.

It changes how you carry yourself through unimaginable obstacles.

And it causes you to live in fight mode because flight mode isn’t an option.

That diagnosis,

It made you feel such an indescribable pain that you don’t allow anything less than to break you.

That diagnosis,

It is a part of you.

You couldn’t stop it from changing your personality if you tried.

And you shouldn’t.

That diagnosis made you unstoppable,

It made you love harder than you knew possible,

And it made you strong.

The type of strong you envied in others,

the type of strong you never could have imagined yourself capable of.

That diagnosis,

It made you everything that you needed to be for your child.

So, let it.

Let that diagnosis become a part of your personality.

Because that personality is the one that keeps you going every single day.

Written by: Carla Moore from Payton's Path

11/17/2025