Cherished in spirit, remembered in love
This space is dedicated to remembering those who lost their lives due to Ehlers-Danlos Syndrome. We honor their stories, their strength, and the impact they made. May their memories continue to shine, and may they never be forgotten.
If you have a loved one who passed away from Ehlers-Danlos Syndrome and you would like them to be included on this page, please contact us. We would be honored to share their story.
We Remember the Ones Who Touched Our Hearts
In Loving Memory of Daphne (23 - hEDS - Netherlands)
Creating a space to honor those who have lost their lives to the consequences of Ehlers-Danlos Syndrome does not come from nothing. In our community, we lose far too many beautiful souls to this condition. There are two people who are always in my thoughts—two people who continue to motivate me to keep fighting for better care.
Daphne is one of them.
Read full Story:
in loving memory of daphne.pdf
We Remember the Ones Who Touched Our Hearts
In Loving Memory of André en Milan (43&14 - vEDS – Netherlands)
June 16th, 2000 was a day filled with love and joy for André and Roelien. They said “I do”, and in 2003 their love was blessed with the arrival of their beautiful son, Milan. Even though André’s health was fragile, they embraced life wholeheartedly.
André and Milan were inseparable, bound by their profound love for rear-engine automobiles. While both shared this fervent passion, their allegiances diverged: André championed the robust Skoda, whereas Milan's heart belonged to the prestigious Ferrari. They had an incredibly beautiful time together as a family during their holiday in the Czech Republic.
Read Full Story:
If you’d like to tell the story of your loved one on this page, you can email us or fill out the form below. Our team will write a story about your loved one and send it to you for approval to make sure everything feels right. Once you confirm, we’ll create a special space for them on this page.
Please upload a photo that captures their spirit — a moment when they were truly enjoying life. That’s how we want to remember them.