This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Friday, March 6, 2015
CBD Hearing-Sharing Jayen's story
The Judiciary Hearing for two CBD bills were today. I was able to watch the hearing live on Nebraska Educational Television! (But around the same time had to be streaming the Wynot girls' basketball playoff game.) I was so happy to be part of this hearing and support those that could be there physically. It was funny getting the play by play and chatting with those in attendance through a facebook support group I belong to. I was so proud of the ones who were able to speak and share their stories. I had to leave to pick up Dalan from school so I was unable to watch for about an hour. I learned that during that time Senator Crawford introduced her bill AND shared Jayen's story. Twice now she has read his story and I didn't get to see or hear it. I'm continually praying for this to be an option for those who are honestly out of option. Praying Nebraska makes this possible!
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