Empowerment

Supporting Families Impacted by Infantile Spasms (West Syndrome)

Our Story

A Commitment to Families and Community

This journey is inspired by my brave son Owen, a West syndrome warrior, who is stronger and braver than anyone I know.

I am inspired by his courage every day.

Through Tykes with Spikes, I hope to expand the knowledge of this rare condition to families, caregivers and healthcare providers to minimize diagnostic delays and improve outcomes. I aim to deliver comfort and community to families affected by West Syndrome and childhood epilepsy.

More on Owen’s story in the blog.

Our Mission

Our Purpose and Goals

At Tykes with Spikes, our mission is to raise awareness and provide unwavering support for families affected by Infantile Spasms. Through compassionate engagement, educational resources, and community engagement, we strive to empower families and foster inclusive environments that inspire hope and understanding of this condition.

Our Value

Core Values We Uphold

We believe in compassion, collaboration, and community. Our values guide us in every initiative we undertake, ensuring that families receive the support, understanding, and education they deserve. We are committed to inclusivity, respect, and advocacy, aiming to create a brighter future for children living with Infantile Spasms.

Our Journey

The Origins and Growth of Tykes With Spikes

Tykes with Spikes was founded in 2025 by me, Kelley, a mom and a nurse practitioner who recognized the urgent need for a supportive community for families dealing with Infantile Spasms (IS). My son was diagnosed at 10 months old with IS after over a month of symptoms, developmental regression, and continuous misdiagnosis by multiple physicians in a variety of healthcare settings. I was completely stunned by how little the medical community and child caregivers know about such a severe form of epilepsy that warrants emergent intervention. My goal is to expand this program to build partnerships with healthcare providers and educational institutions, distributing education, raising awareness while providing connection, understanding, and support to those affected by IS.

Get Involved Today

Join Our Mission to Support Families

For every 100 visits to this website, a bundle of 10 handmade sensory blankets will be distributed to a NAEC (National Association of Epilepsy Center) Hospital where infants undergo testing (imaging, EEGs and lab testing) for Infantile Spasms. Additionally, 10 unique journals will be donated as well for caregivers to track feelings, ideas and medical note and questions.

Take action now and help us make a lasting impact on the lives of children affected by epilepsy.

Get Involved