Share Your Stories

Make DEEP Connections

The DEE-Project mission is to provide consolidated support to families with children who are severely affected by DEEs. While our activities focus on providing relevant webinars and an online consolidated resource center, one of the most powerful ways to break your isolation and make new connections is by SHARING YOUR STORY. Our journeys are intense and are understood and valuable to other families who experience similar challenges on a day to day basis. You can write on any topic on your mind – for some ideas, glance at all the topical sections we will populate over time under the umbrella Resource categories of Medical, Care/Management, Families, and Research.

Send Us Your Story Via Email


  • What strategies have you used to control constant respiratory challenges of extremely low tone children?
  • Have you tried a strategy for “growth attenuation” and with what result? How has this experience unfolded for you?


  • Share an experience of your (likely constant and ongoing) challenges in seeking optimal adaptation of an educational program to support your child’s development?
  • What strategies have you found most doable to maintain some focus on your own self-care?
  • Share some home adaptations you have made that have been particularly helpful for both your child and caregivers?


  • What strategies have you found most successful in building effective sibling relationships between your child with epilepsy and other siblings?
  • Share some of your challenges and successes creating family vacations that successfully accommodate your medically complex child and the rest of the family?


  • Share your experience participating in a clinical trial or a decision to not participate?

Guidelines For Sharing Your Story

  • Stories should be ideally be between 200 and 500 words – but we’re flexible.
  • Give it a short catchy or descriptive title
  • Ideally include a picture of your child, you and your child, or your environment (i.e.not just head shots)
  • Keep the story in the first person – and personal e.g.:
    • What was the challenge you faced (or likely continue to face)?
    • Background on your child and what he/she was experiencing or struggling with?
    • How did you feel?
    • Did you find a useful way to manage the challenge?
  • Stories can be anonymous if you prefer – remember the site is open.

Email Us Your Story Now

The Power of Shared Stories

Sharing Your Stories have enormous power – and many benefits – both to you and those reading your stories.  Capturing some salient aspect of your own experience immediately reduces your isolation. It can be cathartic just in the writing. Sharing stories similarly helps the reader/other parents or caregivers reduce their feeling isolated in the relentless challenges they face daily. And you get to help others by sharing some often novel and creative strategies you have developed to manage the many challenges of children severely affected by DEEs.

Sharing Your Stories helps build our sense of community. We are not alone! We find strength from each other’s journeys.

Our Policies

  • We welcome previously written or published stories that are relevant to the scope and purpose of this community.
  • We will deeply respect all your content and tone but reserve the option to do some minimal editing to help readers follow links to resources included in the site.
  • Please provide a photo with your story! The bigger the photo the better. If you don’t, we’ll use a more generic photo to accompany your content. Please do not send a photo of any recognizable minor child unless you are their parent or guardian (or unless you can get us photo use permission from that child’s parent or guardian).
  • By sending us stories or photos, you consent to our publishing them on this site.