Zoey's Story: Life with CDD

11/03/2025

It’s time to make Zoey’s bathroom safe and joyful!

Many of you know our sweet Zoey — she’s our warrior, our sunshine, and our teacher in resilience. As she grows, we want her home to grow with her. Our biggest goal right now is to renovate her bathroom into a space that’s accessible, safe, and comfortable for her daily needs.

We’ve launched a GoFundMe to help make this possible. Every dollar helps us build a space designed just for her. 💜

👉 Donate or share here: https://gofund.me/2e5387567

Thank you for loving Zoey and cheering her on — your kindness truly changes lives.

Meet Zoey — our sunshine and inspiration. Zoey was diagnosed with CD… Jackie Pickens needs your support for Building a Safe & Joyful Bathroom for Zoey

11/01/2025

🍂✨ Fall Portraits with Our CDKL5 Warrior Girl ✨🍂

I wanted to cry seeing these photos of Zoey — that beautiful smile! 🥹💜 It’s something we haven’t seen since she was diagnosed at just 6 months old. To see her smiling again, with such light and joy, fills my heart in ways words can’t describe.

Every milestone, every moment like this, reminds me of God’s grace and Zoey’s incredible strength. She continues to show us what resilience looks like. 🌿💜

A huge thank you to the amazing Beth Hontzas for capturing these precious moments so perfectly. You gave us more than photos — you gave us memories that we’ll treasure forever. 📸💚

09/04/2025

🌸 Big week ahead for our sweet Zoey 🌸

Next week, Zoey will be admitted to the hospital to begin transitioning to a 𝗸𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝗱𝗶𝗲𝘁. 💜
For those who may not know, the keto diet is sometimes used as a medical therapy to help reduce seizures in children with epilepsy. While it’s not a cure, it has shown real success in improving seizure control for many families—and we’re hopeful it can help Zoey, too. 🙏✨
This is a big step for her and for us as a family. Hospital stays can be tough, but we’re praying this transition goes smoothly and that the diet becomes another tool in managing Zoey’s seizures.
We’d love to ask for your 𝘄𝗲𝗹𝗹 𝘄𝗶𝘀𝗵𝗲𝘀, 𝗽𝗿𝗮𝘆𝗲𝗿𝘀, 𝗮𝗻𝗱 𝗲𝗻𝗰𝗼𝘂𝗿𝗮𝗴𝗲𝗺𝗲𝗻𝘁 during this time. Your love and support truly means the world to us as we walk alongside Zoey on her journey. 💕
Thank you for keeping her in your thoughts! We’ll be sure to share updates along the way. 🌼

08/18/2025

✨ Zoey’s Journey with CDKL5 ✨

Every day, Zoey shows us what true strength and resilience look like. Living with CDKL5 deficiency disorder means she faces challenges many of us can’t imagine—seizures, developmental delays, and daily therapies—but she continues to smile, fight, and inspire everyone around her. 💜

CDKL5 may be rare, but Zoey’s story reminds us that behind every diagnosis is a child with dreams, laughter, and a light that deserves to shine bright. 🌈

We share her journey not only to celebrate her but also to spread awareness, advocate for more research, and connect with other families walking a similar path.

To everyone following along—thank you for being part of her story. Your love, prayers, and support mean more than words can say. 💕

08/06/2025

08/06/2025

🌟 What Is CDKL5 Deficiency Disorder? A Look Into Daily Life With Zoey 💜

You may hear the name and wonder what it means—so here’s a glimpse into what CDKL5 Deficiency Disorder (CDD) looks like for us, every single day.

🧠 CDKL5 is a rare genetic condition that affects brain development. It’s not something Zoey will outgrow. It impacts how she moves, communicates, and experiences the world.

Here’s what CDD looks like in our day-to-day life:

⚡ Seizures—Everyday Reality: Zoey started having seizures at 5 months old, and they’re still part of our daily routine. Some days are better than others, but we’re always on alert.

🧸 Developmental Delays: Milestones like sitting, walking, and talking don’t come easily. Many kids with CDD may never speak or walk on their own—but they find other powerful ways to communicate.

💪 Movement Challenges: Muscle stiffness, low tone, and physical therapy are part of our routine. Adaptive equipment like wheelchairs and standers helps Zoey explore her world.

🗣️ Non-verbal Communication: Zoey doesn’t use words, but she speaks in her own way—with her eyes, sounds, and expressions. We’ve learned to listen differently.

🍽️ Feeding Difficulties: Eating can be tough. Many children like Zoey use a feeding tube to get the nutrition they need.

🌙 Sleep Struggles: CDD doesn’t take a break at night. Sleep can be unpredictable—for her and for us.

Despite all of this… Zoey is full of light, strength, and sweetness. 💕 Her smile says more than words ever could. Every day with her teaches us resilience, joy, and what it means to love unconditionally.

🦋 We share this to spread awareness, to help others understand, and to honor the journey of all CDKL5 warriors and families.

Thank you for following along and loving Zoey with us. 💜

08/05/2025

And just like that… Zoey is off to Pre-K! 🥹✨
Zoey’s first day was filled with big smiles, a cute outfit, and all the bravery this little warrior carries in her heart. Watching her grow into her own special, sassy self has been the biggest gift. 💜
Here’s to a school year full of learning, laughter, and so much love. Go shine, Zoey girl! 🌟📚💕

06/18/2025

It's World CDKL5 Day! Thanks for sharing the info CDKL5 in Color ! Take a sec to learn about Zoey's condition 💚💜

06/02/2025

🎥 What is CDKL5?
This short video helps explain the rare neurological disorder that affects our Zoey and so many other children worldwide. 💜

Take a moment to watch and learn. Your awareness makes a difference. 💚

CDKL5 Deficiency Disorder is a rare genetic condition caused by mutations (or changes) in the CDKL5 gene. This gene plays a critical role in brain developmen...

06/02/2025

💜 June is CDKL5 Awareness Month 💜
And this sweet girl right here — Zoey — is the reason this month means so much to our family. 💫

At just 6 months old, Zoey was diagnosed with CDKL5 Deficiency Disorder, a rare neurological condition that affects her development, motor skills, vision, and causes seizures that are incredibly hard to control. But if you’ve ever met her, you know — she’s full of light, love, and strength beyond words. 💪🏽💚

Sharing our journey hasn’t always been easy, but we do it to raise awareness, offer hope to other families, and remind the world just how powerful love and community can be.

To all of you who have prayed for us, checked in, shared our posts, or just been here — thank you. Your support truly lifts us.

✨ Here’s how you can help during CDKL5 Awareness Month: 📣 Share this post or your own with
📚 Take a few minutes to learn about CDKL5. https://www.cdkl5.com/
💌 Keep kids like Zoey in your heart and prayers

We believe in a future where every child with CDKL5 gets the care, support, and recognition they deserve. And with your help, we get a little closer to that every day.

05/08/2025

To the amazing teachers who love and care for Zoey,
This Teacher Appreciation Week, our hearts are full of gratitude for each one of you. 💜
Thank you for seeing Zoey—really seeing her—and meeting her with patience, creativity, and so much love every single day.

Your dedication, your smiles, your gentle encouragement, and the way you make her feel safe and included mean the world to us. You’re not just teaching her—you’re pouring into her life in ways that words could never fully capture.

Thank you for being her cheerleaders, her guides, her safe place.
Thank you for partnering with us on this journey.

With love and endless appreciation,
Zoey’s family 💐🍎💜

05/02/2025

💚 May is Mental Health Awareness Month… and listen — your mental wellness is not just important, it’s mandatory.

Especially when you're a caregiver of someone with special needs, juggling appointments, therapies, emotions, and maybe even drinking cold coffee at 3 p.m. wondering what day it is 😅 (just me?).

The truth is: this life can be a lot. Beautiful, yes — but also overwhelming, exhausting, and unpredictable. And that’s why mental health isn't a luxury… it's survival.

So this month (and every month), I’m giving myself permission to:

✨ Say no without guilt
✨ Cry when I need to
✨ Laugh at memes at midnight
✨ Take deep breaths in the bathroom like it’s a spa
✨ And celebrate every single small win

Because showing up for Zoey means I have to keep showing up for me, too. And if you’re in this fight — parenting, caregiving, advocating — I see you. You deserve care, too.

Mental health matters. YOUR mental health matters. Don’t forget that 💚