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"Not another moment lost to seizures"

This is something that I think about often.  My daughter, Charlotte, was diagnosed with a rare epilepsy syndrome called Infantile Spasms( West Syndrome) with hypsarrythmia in Jan 2009. We believe her seizures are a result of a stroke that she had at birth.  Since then I have watched her have at her worst 450 + spasms a day. Charli underwent major brain surgery in May 2010 to control her seizures and I'm happy to report her surgery has done just that.  But there are still countless others who struggle and fight daily to gain seizure control.

Charli has spent more time in dr's offices, hospitals, testing facilities then I have probably my whole life.  And all through this she smiles, laughs, and melts my heart with her gorgeous bright blue eyes.  This child amazes me every day, and seems oblivious at times to the damaging seizures that she has daily.  Infantile Spasms are characterized by hypsarrythmia, a high voltage chaotic constant brain wave that interferes with the brains normal process to learn and develop.  It often causes regression, developemental delay , and mental retardation. 

Charli has continued to move forward developmentally (albeit at her own pace) despite her seizures and hyps.  The dr's are so proud and amazed at this.  We need help to raise awareness, remove the stigma that goes along with being epileptic, and help generate interest in making new anti-epileptic drugs and clinical trials.  And for that, we need funds.   So I'm asking each of you, if even a small amount, to please donate and help our cause. Help us be able to reach out further to  new parents just starting on this long road called epilepsy, help us be able to tell our children new treatments are available because a study or trial was able to be funded. Help us be able to tell our children that epilepsy is something they have ...NOT what defines them.  My child has epilepsy. My child has a horrible rare form of epilepsy. But my child is so much more than her diagnosis.  Please help us fight so that Charli, her friends, and all of those affected by epilepsy can have

"Not another moment lost to seizures".

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

 

You can follow Charli here on her blog and watch her continued progress since surgery!!