I just read one of the blogs that I check almost every day, about a 4 year old little girl with many struggles, including infantile spasms, named Jordan. She passed away yesterday. It was unexpected and in her sleep.
This family is amazing. The Rowes live in Vancouver WA which is about 2 hours from here. I have read their blog for more than a year and unfortunately the old blog had been lost and they just started a new one. I am just so saddened by this news and can't even imagine the sorrow they are experiencing.
My thoughts and prayers are with them.
http://devonandleslierowe.blogspot.com/
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
1 comment:
I read about Nora, and Arachnoid Cysts most definitely are a big problem. But I am not surprised your doctor told you otherwise. I have had many brain surgeries because of my 1 Arachnoid Cyst, and I would like to invite you to visit Arachnoid Cyst Awareness at www.arachnoidcystawareness.com and also Arachnoid Activist, which is an awesome support group with over 50 forums dedicated to supporting those with Arachnoid Cysts: www.arachnoidactivist.com
I hope you are able to find a good doctor who takes Nora's arachnoid cysts seriously,
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