Share Your Story

Every family affected by Stromme syndrome carries a story that is powerful, unique, and deeply valuable.

Because Stromme syndrome is so rare, many parents and caregivers feel isolated or overwhelmed by the unknowns. By sharing your experience, you help others feel less alone—and contribute to a growing collective understanding of this condition.

Whether you’re just beginning this journey or have years of experience behind you, your story matters.

What to Include

There’s no right or wrong way to tell your story. Here are a few things you might choose to share:

  • How and when your child was diagnosed
  • What symptoms or challenges you’ve encountered
  • Any milestones, joys, or surprises along the way
  • Reflections on parenting, caregiving, or advocating for your child
  • What you wish you’d known earlier—or what gives you hope today

You’re also welcome to include photos if you feel comfortable.

Submit Your Story

Use the form below to share your story with us. We may follow up if we have any questions or need clarification. Submissions may be lightly edited for clarity or length, but your voice will always be honored.

Name
Are you willing to share photos of your child and/or family on this site? We will email you for photos.
By checking this box, you acknowledge that we have permission to share your story on this website.

Stay Connected

We also host a private Stromme Syndrome Facebook community where families can connect, ask questions, and offer support to one another in real time. You’re warmly invited to join us there.

Whether you’re ready to share your story or simply looking for a place to feel understood, we’re so glad you’re here.

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