Hope4Harper CDKL5usa

01/08/2026

10/28/2025

It is done! Another amazing year of progress!

10/28/2025

Looking Good!

10/26/2025

Finding ways to make a difference in the lives of others in the special needs community!

10/25/2025

Barnes and Nobel

Discover Lily's Love: A Siblings Guide to Seizures by Lily Kristen Howard, Natalia Reyes and millions of other books available at Barnes & Noble. Shop paperbacks, eBooks, and more!

10/25/2025

Available Now on Amazon!!!

A child's-eye view of seizures, sibling love, and strength in uncertainty. When your sister has seizures, life can feel confusing, scary, and unpredictable. Why does she shake? What should I do? Is it my fault? These are questions siblings often ask―but rarely get clear, comforting answers to. ...

09/29/2025

How do you explain seizures to a child?

Hi Im Lily!
When my little sister Harper was born with CDKL5, I was only 2 years old. I sat there watching her have seizures, and I had no words for what was happening.

There wasn’t a children’s book to help me understand… so, I wrote the one I wish existed.

If you know a family living with Epilepsy, please share this so the kids who don’t quite understand have the words I never did.

If you know a family living with epilepsy, please share this or tag them. Together, we can make sure no child feels as lost as I did. 💜



https://store.bookbaby.com/book/lilys-lovent

09/25/2025

OMGoodness!!! 🎉 It’s REAL!!!
Lily’s book Lily’s Love: A Sibling’s Guide to Seizures is officially LIVE! 💜

✨ Order now on BookBaby: https://store.bookbaby.com/book/lilys-love
Amazon + Barnes & Noble coming next week! 📚

Natalia did an amazing job bringing Lily’s story to life! It was a lot of fun watching her and Lily work through artistic concepts involved in creating a children’s book.

I had no idea all the layers (art, colors, font…etc)

09/23/2025

Going Live October 2025...

Lily Howard wrote Lily’s Love: A Sibling’s Guide to Seizures for two deeply personal reasons. First, she wanted to create the kind of resource she wished had exi...

09/21/2025

“Seizures can be scary! The book you are holding lovingly demystifies them from the vantage point of a school age child learning about what to do when her sibling has a seizure. Highly recommend for all children to read! ~Dr Ray Tsai, MD

09/17/2025

“Love, love, LOVE! This book is a beautiful tool for opening tough but necessary conversations. As a mom of typical sons with a medically complex daughter, I’m so grateful Lily shared her story”
—RACHAEL SELMESKY

09/17/2025

“As a mom living with epilepsy, I’ve learned that Epilepsy has taught me patience, resilience, and how to ask for help when I need it. I’m proud to be raising my children with compassion and courage, showing them every day that challenges don’t define us-how we face them does.” ~Jordan Thrash