J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


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Sunday, September 21, 2008

BREAKING NEWS - ADA Amendments Act Unanimously Passes House and Senate

WASHINGTON, D.C., September 17, 2008—The Epilepsy Foundation applauds Senate and House leaders for passing the ADA Amendments Act of 2008 by unanimous consent. This marks a historic move toward securing the promise of the original Americans with Disabilities Act (ADA), signed into law by President George H. W. Bush in 1990. Visit www.adabill.com for more information.

This is a major victory for people with epilepsy who have seen their protections under the Americans with Disabilities Act disappear over the last decade,” said Eric R. Hargis, president and CEO of the Epilepsy Foundation. “We salute Congress for making great strides towards strengthening the American workforce.” Former congressman and Epilepsy Foundation immediate past board chair, Tony Coelho, a key author of the original ADA, added, "For those of us with epilepsy, this legislation is even more important than the original passage of the ADA. This bill was primarily focused on correcting our exclusion from the ADA. The Congress listened to us and we thank them!"

"This bill continues our ongoing effort to expand opportunities for individuals with disabilities to participate in the American Dream," said Sen. Orrin Hatch (Utah). "Passage of the ADA Amendments Act ensures the Americans with Disabilities Act will continue to help change lives. I'm proud to have worked with my good friend Tom Harkin in crafting this monumental bill that enjoys such strong bipartisan support." This legislation clarifies for the courts that people with disabilities should not lose civil rights protections because their condition is treatable with medication or can be addressed with the help of assistive technology.

The bill also addresses the definition of disability making it clear that Congress intended the ADA’s coverage to be broad, to cover anyone who faces unfair discrimination because of a disability. In the past, Supreme Court rulings have eroded the ADA, leaving people with disabilities including epilepsy, diabetes, cancer and mental illness without the protections Congress envisioned when the ADA was originally enacted.

(source: http://www.epilepsyfoundation.org/epilepsyusa/news/Americans-with-Disabilities-Act-Gets-a-Boost-from-Unanimous.cfm)

1 comment:

andrea said...

I can't believe that it wasn't covered before. Shocking!! Great work to get it covered now.