Stories
The Reason We Do
This Work
Before the mission statement, before the board, before the comfort bags, there is a family in the ICU, terrified and unprepared, holding onto whatever small sign of care the world offers them.
The stories on this page are those signs. They come from families we have served, hospital partners who have witnessed the impact, and from our own family’s journey with Cheyne. Read them when you need to remember that the work matters. Share them when someone you know needs to know they won’t be alone.
What Families Are Saying
The discharge process often moves faster than families are prepared for. Before your loved one leaves the facility, push for clarity on these areas, even if you have to ask twice:
“They have thought about everything you can possibly need.”
— Families served through Scripps Memorial Hospital La Jolla
“You don’t even know what to ask for when people ask what you need — and they just knew.”
— Families served through Scripps Memorial Hospital La Jolla
“I’ve been in several hospitals and never had anything so special. I wish I had this when my dad was in the ICU.”
— Families served through Scripps Memorial Hospital La Jolla
“The notebook to write questions and my thoughts down was awesome — especially since it’s hard to put my thoughts together.”
— Families served through Scripps Memorial Hospital La Jolla
“I used the oils on myself and my daughter and love that the hospital encourages alternative healing options.”
— Families served through Scripps Memorial Hospital La Jolla
“Receiving a comfort bag in the ICU was a moment of relief for our family. It reminded us that we were not alone during the scariest time of our lives.”
— A. Martinez, Family Member
“The Comfort Bag helped us feel grounded during chaos. We weren’t alone.”
— L. Hernandez, Family Member
From Our Hospital Partners
“A traumatic brain injury turns a family’s world upside down in an instant. As a parent of a child who suffered from a severe TBI, I know how isolating and overwhelming the ICU experience can be. The Cheyne’s Brain Comfort Care Bags feel like a warm hug — offering compassion, reassurance, and a reminder that families are not alone during one of the hardest moments of their lives.”
— Paige Colburn-Hargis, Trauma Injury Prevention & Community Outreach, Scripps Memorial Hospital La Jolla
“As a Trauma Social Worker I understand the importance of taking care of the family’s emotional and physical needs — and these comfort bags do exactly that. The response has been overwhelmingly positive. We would love to continue providing them to all of our traumatic brain injured patients’ families.”
— Stacee Feiler-Blakey, LCSW, Trauma Social Worker, Scripps Memorial Hospital La Jolla
“The Rady Children’s Health Trauma Team would like to extend a heartfelt thank you to Cheyne’s Brain for the generous donation of comfort bags supporting families affected by traumatic brain injury (TBI). A TBI is often a sudden and life-altering event that leaves families overwhelmed, frightened, and facing an uncertain path forward. During this difficult time, even small acts of kindness can provide comfort and support. The comfort bags provided offers practical items and thoughtful resources to help ease some of the stress families experience while in the hospital. Beyond the items themselves, these bags send a powerful message to families that they are not alone and that a caring community stands with them. We are grateful for Cheyne’s Brain compassion and bringing comfort to families when they need it most.”
— Leah Hill, MSN, RN, CPEN Trauma Center| Rady Children’s Health Trauma Outreach Coordinator
Cheyne's Story
ON April 27, 2014, Cheyne Johnston, an avid surfer and athlete, was out for a ride on the motocross track with his then 6-year-old son and other family members and friends when he had an accident that changed not only his life, but all of the lives of those who loved and knew him in an instant.
He could have given up and succumbed to his injuries. But he did not. His will to live has been the driving force in doing everything we can to help him thrive—and not just survive. He is different but the same in so many ways and this has been a journey of navigating a new world and understanding how he fits. We are fierce advocates for his human right to be loved and cared for and we learn so much from him every day on how to be better humans.
After 12+ years he is healthy and incredibly happy and brings so much joy in our lives. He inspires us all.
Karen's Story
Karen Macbeth didn’t plan to become a nonprofit founder. She planned to be present for her son. But over twelve years of navigating the TBI world, the ICU, the rehabilitation facilities, the long road home, and the decade of daily caregiving that followed taught her something she couldn’t keep to herself.
Families in this situation deserve better than confusion, isolation, and navigating an overwhelming system alone. So she built something to change that.
“I am now over 12 years into this journey with Cheyne. As family members we embark on this journey of care and support without a map or clear path. I hope to be a compass for you. While each brain injury is unique, there are commonalities and challenges that we learn about by sharing and reaching out to each other. This is a creative and challenging journey. I am here to support you on your own unique path — in whatever way I can. Never give up hope.”
— Karen Macbeth, Founder, Cheyne’s Brain Foundation
Share Your Story
If Cheyne’s Brain Foundation has made a difference in your family’s journey, if a comfort bag arrived at the right moment, if a support group call helped you through a hard week, if something we shared gave you language for what you were feeling, we want to hear it.
Your story has the power to reach the next family walking into the ICU right now. It can be the thing that reminds them they are not alone. You may share anonymously or with your name. All submissions are reviewed with care before publishing.