Zoey's Story: Life with CDD

11/16/2025

Thank you so much to everyone who has shared, donated, and covered our family in love and prayers. 💜 Every contribution brings us one step closer to building a safe, accessible bathroom for Zoey, and we are truly grateful. We can feel God moving through your generosity.
If you feel led, please continue to share or give—your support is making a real difference for our sweet girl. 🙏🏾✨

Meet Zoey — our sunshine and inspiration. Zoey was diagnosed with CDKL5 … Jackie Pickens needs your support for Building a Safe & Joyful Bathroom for Zoey

11/07/2025

Between therapies, hospital visits, and endless love, caregiving for Zoey means finding strength in the small moments. 💜

Our next step is remodeling her bathroom to make it accessible — a space where safety, comfort, and joy meet. It’s more than tile and fixtures — it’s about dignity, independence, and love made visible.

Please consider supporting Zoey’s GoFundMe and sharing her story so we can make this dream a reality.

Meet Zoey — our sunshine and inspiration. Zoey was diagnosed with CDKL5 … Jackie Pickens needs your support for Building a Safe & Joyful Bathroom for Zoey

11/07/2025

Our story was recently featured in The Birmingham Times — a reminder that faith, family, and fortitude truly can carry you through anything. 💜

Zoey continues to teach us what resilience looks like every single day. As we care for her and help her thrive with CDKL5 disorder, we’re also working toward making our home safer and more accessible for her daily needs.

We’ve launched a GoFundMe to remodel her bathroom — giving her the dignity and comfort she deserves. If you feel led, please read our story and share or donate to help us reach our goal.

Gofundme link: https://gofund.me/618f71729

Read our story here: https://www.birminghamtimes.com/2025/11/faith-family-and-fortitude-caring-for-zoey/

🙏🏽 Every prayer, share, and dollar makes a difference.

By Don Rhodes II | The Birmingham Times Every morning for Lamont and Jackie Pickens begins with prayer. Lamont finds a quiet place in their Pinson home, his secret place early in the morning, “befo…

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...