Million Prayers For Sydni

Kansas City, Missouri

4 1/2 years ago my seemingly normal and healthy 4 year old began having seizures out of the blue. She has had them 24/7 since, about 10 types. Literally thousands a day total. They are primarily the tiny ones that we don’t see but interupt her thought and physical process almost constantly. Most days she has at least 1-2 “drops” sometimes 0 and sometimes 5 or 6, thus the bumps and bruises and breaks. There is no warning before she drops.

This isn’t regular childhood epilepsy it is Doose syndrome. We are between neurologists, but this is an ever changing atypical set of seizures with no known cure or set prognosis.

We have done keto, about 8 or 9 meds, the Vagal Nerve implant, and now we have eliminated a bunch of food allergins. This last month or so has shown the most promise we’ve seen in over 4 years, and I believe we are on the right path.

Sydni isn’t just a helmet and seizures though, she is so funny, happy, polite, and VERY strong willed. She has taught me more in the last 55 months than I could have learned in my life time. I just want to see her enjoy the things we all take for granted, the park equipment, playing tag, writing her name, getting herself completely dressed no help.

She is almost 9 now, and I feel we are getting closer!!

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