Lorelei

Lorelei is six and was diagnosed with epilepsy four years ago. She has been on over ten different medications as well as a myriad of combinations of those medications and the Ketogenic diet, all with little to no success. Lorelei suffers hundreds of seizures every day. Her condition and her pharmaceuticals impact her life in so many ways, including, but not limited to, developmental delays, behavioral problems, sensory processing delays, emotional and social deficits and lack of impulse control. Of course, her pharmaceuticals also carry side effects like organ failure, kidney stones, depression, intestinal problems and so much more. Medical cannabis could be the answer for Lorelei where all else has failed. Lorelei used to be a happy, well adjusted little girl. She is now just a shell of her former self. Please help me get my Lorelei back.

Update March, 2014

Just days before the hearing on January 28th, Lorelei had surgery to have a permanent feeding tube, called a G-tube, placed. Lorelei's condition and sensory issues make it nearly impossible for her to tolerate food by mouth. The G-tube was necessary to maintain her caloric needs to live. Our hospital stay lasted four days. We continue to have problems with her feedings and her G-tube site.

On February 19th, Lorelei had to be admitted to a hospital in northern New Jersey for a three day video EEG. Twenty or so leads were super glued to her scalp and she had to remain in her hospital bed for all of those three days. This is necessary to collect data and for her to be in front of the camera. We were told that Lorelei just may have "Lorelei's syndrome". She just doesn't seem to fit any specific diagnosis. We are still looking for answers and an effective treatment.

That brings me to today, March 3rd. Lorelei is currently under anesthesia, having a procedure. She has complained of abdominal pain for months now and we are, again, searching for answers. Waiting for biopsy results. Waiting is something we do an awful lot of.

Lorelei has so many seizures, it's difficult to keep count. She has between 200-400 seizures every day. In the thirty-five, plus days since the hearing, Lorelei has had 7,000-14,000 seizures. Putting it in black and white is even shocking for me. It's incomprehensible to think that this is somehow ok. That my Lorelei is being made to suffer like this when there is something, as benign as cannabis, that can help her. 

I want more for Lorelei. I want more for all of these children. I want more for all of Pennsylvania. Please call your legislators, call Governor Corbett, insist that they support Senate Bill 1182, The Compassionate Use of Medical Cannabis Act. The time for action is now.

You can follow Lorelei's journey by "Liking" her facebook page, Legalize for Lorelei, at www.facebook.com/legalizeforlorelei.