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About
chd legacy

CHD Legacy Publishing features it's first book:

QUIETING THE CLOCK: MEMOIR OF A GIRL FACING DEATH AND CHASING FREEDOM 

CHD Legacy began as blog publishing - featuring Adult Congenital Heart Disease Patients who are surviving into their 20's, 30's and 40's for the first time in history.

 

 

 

 

 

 

 

This website and interactive forum (now unavailable) was the groundwork for a CHD Empire of Resources I blogged about and began to create, 10 years ago. It has since been created as a centralized location for CHD Adults and other people struggling with a disability to feel they weren't alone. One of my goals was to help loved ones and medical professionals understand us more. Yet, the most underlying goal in creating the CHD LEGACY Empire was to encourage others to JOIN ME in speaking out about the Mental Health aspects of living with an invisible disability or chronic illness, as well as the reality of the physical struggles we deal with every single day. 

However, beginning in 2020, CHD Organizations began to take and copy my ideas, my website, and parts of my Advocacy instead of simply asking me to join forces with them where we can RISE UP TOGETHER and have a stronger network. I became very very ill suddenly toward the end of 2020, resulting in the entire year of 2021 in the hospital and constant procedures, tests and appointments. Now in 2022 some of those same organizations are doing literally verbatim what I spent YEARS building and spending every second of my energy of my life doing - helping CHD Patients. Again, instead of asking me to participate, they pretend everything was their own ideas even though I have been doing what they are now doing for YEARS. 

For example: Speaking about Taboo subjects, one being Mental Health, has been a passion of mine since 2005, where I began Advocating under a different name due to the amount of shame I carried having this illness. I never want anyone to have to feel that way...so, I created a space for us to feel loved and understood. 

 

I created a blog outside of my own experiences to feature the other Pioneers of CHD (and now other disabilities) called

Voices of CHD: The Elephant.


For those who are not comfortable with the word "disability" I UNDERTSTAND! However, please understand that it is to use one word everyone can understand to refer to a community of anyone who falls under the below description:
 

disability

 noun

dis·​abil·​i·​ty | \ ˌdis-ə-ˈbi-lə-tē  
 

Definition of disability

 

1: a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions

Meet First & Second Generation CHD Survivors & Experts
who tell their stories of being born in a time
when the world was not built for the weak to survive. 
Yet here they are knocking down barriers and squashing statistics 
while blindly teaching themselves, loved ones, CHD Parents,
doctors, and the public how they have created a life
with little to no resources.

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