06/24/2026
Help get Lily and me to Dallas!
My seventeen-year-old daughter turned a high school project about Ehlers-Danlos syndrome into something so powerful that not only did she get an A but her teacher asked to keep it and use it for future classes. Now she wants to take the next step and learn how to become an advocate plus help create and launch EDS West Connect’s first ever Teen Group!
I never expected to be fundraising to bring my healthy daughter to an EDS conference, but here we are.
And honestly, after seeing the project she created for school this year, I can’t imagine a better investment in the future of advocacy.
This is Lily.
She doesn’t have Ehlers-Danlos syndrome.
But she spent seventeen years watching the people she loves fight it, and now she wants to become an advocate.
I’m raising $3,000 to take both of us to Dallas for the annual EDS conference, where she’ll learn from the people who are changing lives every day.
She’s seventeen, a twin, and one of the two of my four kids who don’t have Ehlers-Danlos syndrome. But for seventeen years she’s had a front row seat to what it does to the people she loves.
She grew up on the edge of it. Close enough to watch her sisters go through hell. Close enough to hear her mother talk about doctors saying it was all in their head. She’s been quietly watching.
Watching her sisters fight for diagnoses.
Watching doctors dismiss symptoms.
Watching our family navigate surgeries, hospitalizations, disability, and all the things that come with living in a body that doesn’t work the way it’s supposed to.
Never sick herself. Never able to look away.
For seventeen years, she watched it all… and said almost nothing.
Then her junior-year history project came up. She could have picked anything. She picked us.
She built a shadow box.
On the outside, the American flag, the country that swears it protects its own.
Inside, in the dark, a hand-sculpted zebra stands with its spine left exposed, the thing that’s supposed to hold you upright. Around it, in cut-out newspaper letters like a ransom note, are the words our family has actually heard: all in her head. a diagnosis is not necessary because there is no cure. And the real stories: families torn apart by CPS after hospitals surveilled their sick children to prove abuse that never happened. A mother who took her own life after they separated her from her child over allegations that were never true. Families separated. Families destroyed.
Fine on the outside. The damage only shows if you look inside.
That’s not a craft project. That’s invisible illness, built by a seventeen-year-old out of cardboard and clay.
She didn’t reach out to strangers to make it. She interviewed the three people she loves who live this every day… me, and her sisters Kylee and Maysun and from us she learned the rest: the other families, separated and disbelieved to the extreme. Then she started researching the stories of other families who have walked similar roads.
She took what she’s witnessed her entire life and turned it into something people could see.
She earned an A.
Her teacher asked to keep the box, to teach the classes that come after her.
Think about that for a minute.
A seventeen year old girl created something so powerful that her advocacy will continue long after the assignment is over.
And now she’s taking the next step.
I’m Dena. I have EDS. So do two of my daughters. I built EDS West Connect so families like ours get believed, and nobody fights this alone. Next month I’m going to the national EDS conference in Dallas, as a representative of EDS West Connect, an EDS Society Global Alliance member, and a support-group facilitator, and to keep learning.
To my happy surprise, Lily wants to come with me.
When I asked her, she didn’t pretend to be brave. She said: “I’m scared. I don’t know if I’m qualified. But I still want to do it.”
Qualified.
My kid has spent her whole life watching the people she loves get told they don’t qualify… not sick enough, not disabled enough, not believed. And there she was at the door of this work, scared that she didn’t qualify to speak for us, because she’s the one who isn’t in pain.
She’s exactly who needs to speak. The one who saw all of it.
The witnesses matter too.
The brothers and sisters who grow up alongside complex illness matter too.
The well sibling is the voice this community almost never hears, and my daughter just found hers.
“I want to go with you, Mama,” she said. “And experience something new.”
Lily wants to help EDS West Connect create a teen group. She wants to learn how to become an advocate and make a difference and this conference is where she’ll learn how.
So we’re going together.
A mother who lives with EDS and built a nonprofit because families deserve support.
And a daughter who spent seventeen years watching and decided it was finally time to use her voice.
The conference registration for Lily is free as a youth attendee. My registration is $550. Once we add airfare from Los Angeles, a shared hotel room, transportation, and meals, the trip will cost about $3,000.
Every donation is tax deductible through EDS West Connect.
If you’d like to help send us to Dallas, we would be very grateful.
If you can’t donate, sharing Lily’s story helps too.
Because sometimes the most powerful advocates are the ones who spent years quietly watching.
Donate here:
https://www.zeffy.com/en-US/donation-form/send-lily-and-dena-to-dallas
