My sister-in-law Emily is a great baker. My sister-in-law Emily has severe epilepsy.
I am a certified adult nurse practitioner who can't stand to see people suffer and always tries to figure out solutions to seemingly unsolvable problems.
Thirty-two years ago, when I met Emily, she would have grand mal seizures every 15 minutes for the two weeks preceding her menstrual period. We, not any physicians, recognized this pattern. I spoke to physicians I knew and most had no idea what to do. With prodding, a few were willing to listen.
Over time, a few regimens helped a bit, but the problem persisted and Emily could not drive, work or live on her own. As if this was not enough, in 2000, Emily was given two medications together, developed a rash which her doctor told her to ignore, and in one day she was completely orange. Emily's liver was destroyed. Luckily, a donor liver was found. Emily must be on immunosuppressant drugs for the rest of her life. However, these drugs destroy the joints. Emily, now 52, has had two hip replacements; one knee replacement and is awaiting the second knee replacement in June. The second knee replacement had to be postponed because after the first knee, Emily began rejecting her liver. More drugs and time were needed to save the liver. She currently wears a brace and uses a walker. At last, the coast is clear for the second knee surgery. (The surgery went well (June, 2010) but she now suffers from sciatica pain and still needs the walker.)
By chance, while working as an English teacher (I also have a degree in English) I discovered other women were suffering from what is termed catamenial epilepsy, seizures caused by the menstrual cycle. Now, six years later, one teacher's daughter has had to drop out of college because of her seizures. Her parents have gone everywhere and tried many things, but nothing has solved the problem.
I can't say when the idea first came to me about starting Emily's Edibles. I can tell you how it evolved. My first idea was Emily's Edibles for Epilepsy. My family and I rejected this name because we did not want people to think they might get epilepsy from the pastries.
Time passed and Emily's Edibles and Pastries With A Purpose were both trademarked. They are baked in a commercial bakery in New Jersey using Emily's recipes. All ingredients are kosher. The idea behind the company is simple: instead of buying commercial pastries, why not purchase Emily's Edibles? When purchasing Emily's Edibles, one gets delicious, all natural pastries and contributes to building a research fund for the study of epilepsy in women. As the fund builds, I will advertise for those who wish to study epilepsy in women. I will have a professional review the grant proposals, and if the grant truly studies the effect of hormones on seizure activity in epileptic women, an Emily's Edibles® grant will be awarded.
Emily can no longer benefit from this research since she is now menopausal. This research will prevent other women from suffering as Emily has suffered. Emily's Edibles® honors Emily's baking expertise; how she has survived all the traumas associated with her epilepsy (Emily had seizures from flashing lights, diesel fumes, paint, glue and smoke and still has seizures from low blood sugar and other unknown causes). Emily's Edibles® honors Emily for her joyful approach to life. Rarely does she feel sorry for herself. She has the amazing ability to be happy with and for others. She currently lives in a group home sponsored by the Epilepsy Foundation.
It is my hope that while Emily's Edibles grants fund the study of epilepsy in women, other questions will also be answered. Wouldn't it be wonderful if the answers to these other questions could help Emily to finally live her life on her own and, perhaps, eliminate her epilepsy once and for all?