X Chromosome Rare Disease/Danon Disease
There is a story behind this X Chromosome design that I would like to share with you.
In 2016, my daughter and my two grandsons were diagnosed with Danon disease — a very rare genetic disorder caused by a mutation of the X-linked LAMP2 gene. Danon disease is a lysosomal and glycogen storage disorder that leads to the thickening of skeletal muscles throughout the body, including the heart. Sadly, this often results in heart failure or the need for a heart transplant.
My daughter Dawn and her 16-year-old son both required heart transplants within just six months of each other. Dawn received her gift of life on November 21, 2024, and my grandson received his on May 16, 2025. Dawn’s youngest son has also been diagnosed with Danon disease and will likely face a similar journey.
Over the years, I have been working on designing a piece of jewelry inspired by the X Chromosome. My goal is to create something beautiful and eye-catching that sparks curiosity and conversation — ultimately helping to raise awareness about Danon disease.
Although there are fewer than 500 officially diagnosed cases worldwide, researchers suspect there could be over 30,000 people living with Danon disease without knowing it. My daughter wasn’t diagnosed until she was 28 years old; it was only after her boys were diagnosed in 2016 that we learned the disease was passed through her X Chromosome.
Below, I’ve shared a few of the symptoms my grandsons have experienced, along with links to resources where you can learn more about Danon disease and the signs to watch for. Together, by spreading awareness, we can help others find answers sooner. I will give you a free pair of
X Chromosome earrings with every order, they are not for sale.
https://www.youtube.com/watch?v=IgiXfzmYohM
https://www.danonfoundation.org/
(WPW) also known as Wolff Parkinson's White Syndrome
Raised liver enzymes
Cognitive disorder
ADHD Also know as Attention-deficit/hyperactivity disorder
HCM Also know as Hypertrophic Cardiomyopathy
Developmental Delay
We extend our deepest gratitude and heartfelt prayer to the donors and the donor's family. Your courageous and generous decision to give the gift of life has made it possible for our family to continue sharing moments with our loved ones. We will never forget this incredible act of kindness.
Organ donation truly is the gift of life.
Please consider becoming an organ donor -you could be someone's miracle too.