Discussion
Loading...

Post

Log in
  • About
  • Code of conduct
  • Privacy
  • Users
  • Instances
  • About Bonfire
xeniax ⏚
xeniax ⏚
@Xeniax@mastodon.ml  ·  activity timestamp 3 weeks ago

#westsyndrome #epilepsy

Today is the Epilepsy Awareness day. As a mom of a kid who suffered from a catastrophic form of infant epilepsy known as the West Syndrome, I know how tricky epilepsy may be. We need to better understand this disease, advance medical research, develop equal counseling and community support for patients and caregivers.

I want to share a message of hope. My daughter Lila is now 2.5 years old and she started to talk! She says phrases, she compares things, she can count so fast I am astonished. Yesterday we saw a couple with dogs at a cafe and she said five dogs. I could only see four of them but she saw little extra paws hidden under the table 😉 What a smart little human she is!

May all parents who are going through this journey keep hope in your hearts. We were promised our daughter won't ever walk or talk or even sit by herself. And here she is, thriving! And if you need any help with understanding West Syndrome, contact me. I am happy to help.

  • Copy link
  • Flag this post
  • Block
Martin Schmitt
Martin Schmitt
@unixtippse@mastodon.online  ·  activity timestamp 3 weeks ago

@Xeniax 🙏 ❤️

  • Copy link
  • Flag this comment
  • Block

bonfire.cafe

A space for Bonfire maintainers and contributors to communicate

bonfire.cafe: About · Code of conduct · Privacy · Users · Instances
Bonfire social · 1.0.2-alpha.34 no JS en
Automatic federation enabled
Log in
Instance logo
  • Explore
  • About
  • Members
  • Code of Conduct