Our Story
16 Years of Searching. A Mother’s Love. A Mission Born From Hope.
For 16 years, I searched for answers for my daughter.
My daughter was born with hypermobile Ehlers-Danlos syndrome (hEDS), but for the first 16 years of her life, I did not know it. I only knew that something was wrong.
As her mother, I watched my daughter struggle with things I could not fully understand or explain.
I knew what she was experiencing was real. But I did not have a name for it.
So I searched.
There were appointments.
There were questions without answers.
There was uncertainty.
There was frustration.
There was pain.
There were tears.
There were moments when I felt exhausted and frightened.
There were times when hope seemed far away.
But something was stronger than my fear: a mother’s determination to find answers for her child.
I kept asking questions. I kept searching. I kept advocating. And I refused to give up on my daughter.
After 16 Years, We Finally Had an Answer
After 16 long years of searching, we finally learned that my daughter was living with hypermobile Ehlers-Danlos syndrome (hEDS).
Finally, there was a name.
Finally, there was an explanation.
Finally, we began to understand.
Learning about hEDS did not erase the difficult years that came before it. It could not give us those years back.
But it gave us something we desperately needed: understanding.
And with that understanding came a question that changed the direction of my life: How many other families are still searching for their answers?
I thought about another mother lying awake at night wondering what is happening to her child. Another father searching for answers. Another adult wondering why their body is struggling. Another caregiver desperately trying to help someone they love. Another family moving from appointment to appointment searching for answers.
I thought about people who may feel frightened, frustrated, misunderstood, unheard, or alone.
And I knew our family’s journey could not end with finding our own answer.
Turning 16 Years of Pain Into Purpose
I cannot go back and change those 16 years. I cannot erase the tears. I cannot take away the uncertainty.
But I can decide what those 16 years become.
I chose to turn our pain into purpose.
I chose to turn our questions into awareness.
I chose to turn our experience into advocacy.
I chose to turn our years of searching into hope for another family.
That is why I founded The Andrea Foundation For EDS.
A Mother’s Promise
The Andrea Foundation For EDS is more than an organization to me. It is a mother’s promise.
A promise to raise awareness.
A promise to educate.
A promise to advocate.
A promise to build community.
A promise to help connect individuals and families with information and resources.
And a promise to remind families affected by EDS that they do not have to walk this journey alone.
My daughter is the heart behind this Foundation. Our 16-year journey is the reason it began. Every individual and family affected by EDS is the reason we continue.
For 16 years, I searched for answers for my daughter. Today, I am turning that journey into awareness, understanding, compassion, community, and hope for others.
Our years of searching became someone else’s source of hope.
— Founder, The Andrea Foundation For EDS