Our inspiration: Caoimhín Adams
Caoimhín Adams was a precious son, just eight years old when he passed away on 9 July 2023 after a courageous battle with ROHHAD. Although his life was far too short, the love, laughter, and strength he shared continue to inspire us every single day.
Understanding ROHHAD
ROHHAD (Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation) is an extremely rare and complex disorder. This website aims to raise awareness about the condition and support families affected by it. Every journey starts with understanding.
Caoimhín's legacy
Exploring his life and impact
A beacon of joy
Caoimhín's spirit shone brightly, touching everyone he met with his infectious smile and unwavering resilience.
His favourite moments
From superhero adventures to quiet cuddles, we cherish every memory of Caoimhín's vibrant life.
ROHHAD information
Insights into the condition
What is ROHHAD?
A detailed explanation of the symptoms, diagnosis, and challenges associated with this rare disease.
Impact on families
Understanding the daily realities and emotional toll on families caring for a child with ROHHAD.
Research and progress
An overview of ongoing research efforts and medical advancements in the fight against ROHHAD.
Support and community
Finding strength together
Community initiatives
How we are building a supportive network for families affected by ROHHAD across the United Kingdom.
How you can help
Ways to contribute to awareness and fundraising efforts, making a tangible difference in the lives of others.
Resources for families
A curated list of valuable resources, including medical information, support groups, and coping strategies.
In loving memory
Remembering Caoimhín
Photo gallery
A collection of cherished photographs celebrating Caoimhín's life and the joy he brought to the world.
Tributes and messages
Heartfelt messages from friends, family, and those touched by Caoimhín's story.
The ROHHAD journey continues
How Caoimhín's legacy inspires us to continue raising awareness and supporting others on their ROHHAD journey.
Our mission
Dedicated to awareness
Our vision
To ensure every family affected by ROHHAD receives the support and information they need.
Our goals
Raising global awareness, funding vital research, and providing compassionate support services.
A journey of love and resilience
Caoimhín's story is one of incredible strength, boundless love, and an indomitable spirit that continues to inspire us all. His memory fuels our mission to bring hope and understanding to others facing ROHHAD.
"The dedication to raising awareness in Caoimhín's memory is simply heartwarming. A truly powerful tribute."
– A close family friend
"The dedication to raising awareness in Caoimhín's memory is simply heartwarming. A truly powerful tribute."
– A parent of a child with ROHHAD
"The dedication to raising awareness in Caoimhín's memory is simply heartwarming. A truly powerful tribute."
– A supporter of ROHHAD awareness
Get in touch
Please reach out if you have any questions or would like to learn more about ROHHAD and our awareness efforts.
United Kingdom
Website information
Available 24/7 online
Email us
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