Today’s story in Give It All You’ve Got comes from Taylor.
Hollie’s quote — “You get 3 choices in life: give up, give in, or give it all you’ve got” — inspired this series. Taylor is an adult living with HH Syndrome, 21 years past the surgery that significantly reduced — but didn’t eliminate — Taylor’s seizures. Taylor came to our 2026 Patient and Family Conference in Chapel Hill with two of the most important people in Taylor’s life: mom, and sister Brittany.
What “giving it all you’ve got” means to Taylor
“To me, ‘Giving it all you’ve got’ being the best person I can be in God’s eyes and giving it 100%, but sometimes giving it all I’ve got is hard to handle. Then, I am reminded that God gave me something unique and that I mean something special to Him. I remind myself that I am special. I’ve accomplished and dealt with a lot with my HH in my life, even though it might not look like it to others. My journey is different, but I am in it for the long haul.
When I walked into the Adults Connections Panel in Chapel Hill I felt very nervous, shy, and scared. I questioned why I was here and didn’t want to talk to anybody. Do these people really know what I went through and what I am still going through? I’ve only had my family who really know my struggles and sometimes I really don’t think they feel my struggles. Then I got to meet the people at the conference. Sure, I know I am still special, but the people I met at the conference made me feel better knowing I am not alone.”
What HH Syndrome tried to take — and what Taylor found instead
“Having HH Syndrome has not been easy for me. Even though my surgery cut my seizures down significantly, I still have them. I had memory issues and still do. I feel more pain, where as, before surgery I did not feel any. I have had to learn to do things over and memory recall was difficult.
HH Syndrome tried to take away my love for motocross, and though I do not race anymore, I am a photographer at the races. My pictures have made it into several magazines and also have been on several motocross magazine covers. People notice me for who I am, and that makes me feel good.”
What family and community mean to Taylor — and Taylor’s message to others
Taylor made the trip to Chapel Hill with two of the most important people in Taylor’s life: mom, and sister Brittany.
“My family has always been with me throughout my journey. It really made me feel special. When Brittany told me about the conference, it made me feel special in her eyes. It made me realize, my sister still cares and has an interest in making my life easier.
HH Syndrome has taught me that I am special, I am strong, and that this is who I am. My purpose is to help others.
What would I tell someone who has been living with HH? You are special. You are not alone. There are people out there like you. Just keep fighting the fight. You got this! Never give up.”
Thank you, Taylor, for showing this community what it looks like to turn what HH Syndrome tried to take and build something new in its place. This is why we fight.
Inspired by Taylor’s story? Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
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