The Neonatal Seizure Registry (NSR) is an alliance of nine US centers that have worked together since 2012 to study the causes and consequences of neonatal seizures. Over the past four years, the NSR team has recruited and followed 300 children with neonatal seizures to understand how to the length of treatment may influence development and the risk of epilepsy, as well as the impact of having a child with neonatal seizures on parents’ well-being.Read more
Life chillaxing on the hammock was beautiful... feet extended ...free floating in pure air. Breeze at my back. Of all the things I miss about life before quarantine. I miss Noah’s hammock the most. He was never without it. Most never have taken any note of it. It took me 15 years to weave it. I picked each strand of rope carefully and worked tirelessly... day & night making all the right connections ... until one day, it had just the perfect amount of support to lift Noah up. Then, I placed him in it & he smiled.
Most never realize how extensive & important community services are for individuals like Noah. Whenever you have met Noah in the past, you may have not realized how supported he was. You just saw him ... his smile but in reality ... Everywhere Noah goes... He never travels alone. He is supported by a hammock of community services intricately woven by me.
Each strand of rope in his hammock is essential to his well being. If you remove even one. The whole hammock is less supportive. It can work but the integrity of the whole structure is compromised. If you remove too many strands in the hammock of services, it can be dangerous. Someone can get hurt. Noah could get hurt. I could get hurt. It could hurt our family.
Eliana Mae was born into this world at 6:38 pm on September 18th 2015. Despite all the odds against her she fought her way through 7 weeks in the NICU.
We were never given an official life expectancy lecture, what we were given instead were encouraging words of hope from her neurologist. He informed us that the brain is a magnificent organ, despite the severe trauma Eliana suffered, there was hope of neurological pathways to re-develop. "She will have disabilities, but to what extent don't know."
We spent the next 2 years battling new diagnoses, medications and surgeries. There were some very dark times but also some very bright ones too. But despite everything we faced, we faced it as a family, together. So, we kept pushing forward, no matter how much we got knocked down we always remembered that if Eliana was strong enough to fight, so were we. So we fought right along side her.
Today is HIE Remembrance Day, a day to remember and honor those lost to HIE.
Hope for HIE wanted to create a day dedicated to the little ones who lost their lives due to HIE and their families, and selected April 20 as that day. Today, we share stories of those children, reflect on their lives, and create a wave of light to show support to their families.
We support all families affected by HIE. We have created a list of ways you can support families too.