Liss Life: Perfectly Made

10/10/2026

💜🩵 Inclusion Starts With Friendship!

Every child deserves to feel seen, valued, and included. But sometimes, children simply don’t know how to connect with someone who moves, communicates, or plays differently than they do.

At Liss Life: Perfectly Made, we believe that teaching children about differences helps build a world where kindness and understanding come naturally.

🌊 Lissy the Manatee is here to remind us that inclusion doesn’t have to be complicated!

Sometimes it’s as simple as:
💜 Saying hello and making someone feel welcome.
🩵 Being patient with different ways of communicating.
💜 Finding ways to play together.
🩵 Offering friendship, not just help.
💜 Understanding that different doesn’t mean less.

For children living with lissencephaly, communication, movement, and everyday activities may look different. But their need for connection, belonging, and friendship is just as important as anyone else’s.

Let’s teach our children not just to notice differences, but to understand, respect, and embrace them.

✨ Because inclusion isn’t just about being in the same room. It’s about being part of the experience.

🌐 www.lisslife.org

10/08/2026

G-tubes can look very different from child to child — and understanding the type, size, ports, and basic specifications can make everyday care feel a little less overwhelming. 💜💙

This quick guide breaks down some of the most common feeding tube types families may hear about, including standard G-tubes, low-profile buttons, GJ tubes, and J-tubes, along with terms like Fr size, stoma length, balloon volume, and ports.

Every child’s feeding plan is individualized, so always follow your child’s GI or surgical team for tube care, replacement, and feeding instructions. Our goal is simply to help families feel more informed and prepared when these terms come up.

Knowledge empowers families.

10/07/2026

10/06/2026

💜🩵 World Cerebral Palsy Day — October 6th 🩵💜

Today we celebrate and stand beside everyone living with Cerebral Palsy — including so many within our Lissencephaly community.

For many Lissencephaly families, CP is part of our children’s journey. We know firsthand that abilities can look different, milestones may come in their own time, and everyday accomplishments can mean so much more than the world may realize. 💜

Today is a reminder that different abilities do not mean lesser lives. Our children deserve to be seen, heard, included, supported, and celebrated for exactly who they are. 🩵

To every parent navigating therapies, equipment, appointments, hospital stays, advocacy, and all the challenges that come with caring for a medically complex child — we see you, too. Your love and determination matter.

💜 Awareness creates understanding.
🩵 Understanding creates inclusion.
💜 Inclusion creates a world where every child belongs.

Today, we celebrate our CP warriors, their families, their caregivers, and the incredible strength found within our community.

Different journeys. Different abilities. Same worth. Same love. Same fight. 💜🩵

10/05/2026

Temperature changes can sometimes be part of the epilepsy picture. 💜

For some children, caregivers may notice unusual warmth, sweating, chills, flushing, or other changes around seizure activity. Illness, heat exposure, dehydration, and certain medications can also affect temperature regulation.

These slides break down:
• what temperature irregularities can look like
• what patterns may be worth tracking
• when to call your child’s medical team
• when emergency help may be needed

Every child’s pattern is different. Paying attention to those small changes can give families and medical teams useful information.

Save this post for later and share it with another epilepsy family who may need it.

Educational information only. Always follow your child’s individualized medical and seizure action plan.

10/01/2026

Happy October!!! What are your favorites?🎃

09/29/2026

☕💜 Caregivers, this coffee is for YOU! 💜☕

It’s National Coffee Day! 🎉 And if you’re a caregiver, we hope you take a moment to grab that free cup of coffee and enjoy it—because you deserve it! 🫶

Between hospital stays, appointments, sleepless nights, and everything in between, caregivers give so much of themselves every single day.

So today, let someone else pour the cup. ☕
You’ve earned it. You matter. And you deserve a little pick-me-up, too! 💜💙

(Not all offers are guaranteed. We just gathered what we could find)

09/26/2026

Lissencephaly is more than a diagnosis. Behind every medical term is a child, a family, and a story still being written. 💜

At Liss Life: Perfectly Made, we’re working to bring greater awareness to lissencephaly while giving families, caregivers, educators, and healthcare professionals easier access to reliable information, free resources, advocacy tools, and support.

This clip comes from the final episode of our docuseries, A Story Still Being Written — a look at how far the lissencephaly community has come and the families continuing to shape its future.

Learn more about lissencephaly, explore our free resources, discover our work, and find ways to get involved:

🌐 LissLife.org

Because every child has a story.
Every family deserves support.
And this story is still being written.