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D’Layne was diagnosed with Danon disease at the age of five
Hi, I’m Amy. I am one of the Co-Founders of the Danon Foundation. Danon disease came into our life with my daughter, D’Layne.
She was born in 2006 and at the age of four, her pediatrician had discovered that she had a heart murmur. We went to cardiology and found out that she had hypertrophic cardiomyopathy (or HCM). Genetic testing confirmed her Danon diagnosis at the age of five and she was placed with an ICD before starting kindergarten.
I was the typical mom. We went to cardiology once a year and just lived our life.
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In 2018, at age 11, D’Layne had a major stroke, which put us in immediate heart failure and started our journey to transplant. She received her gift of a new heart in September 2018, but her body was a little more deteriorated than we anticipated. She did not wake up after her successful heart surgery. We took her off life support on September 26, 2018.
“Despite her Danon diagnosis, I did not put D’Layne in a bubble. We did everything we could to provide her with a normal life. Now, I do this work to keep her memory alive.”
I have spent the last several years fighting for the Danon community and the people living with Danon disease — making sure they understand that they’re not alone.
If you are interested in sharing your story or being featured in our newsletter, please email us at: contact@danonfoundation.org.