This is Mallory, age 7, who until December 2019 was a healthy, witty, and energetic little daredevil (nicknamed KinderHulk). Six months later, after well over 100 seizures, she was diagnosed with Lennox-Gastaut Syndrome, a rare and especially scary form of epilepsy. She’s been on nearly a dozen medications (as many as 24 pills a day) and has tried and failed the Keto diet (originally developed for epilepsy—who knew?). Most of these meds made her nauseous, dizzy, confused, disoriented, forgetful, and exhausted, and failed to help with the seizures. This also meant missing large chunks of first and second grade. With her frequent falls our two-story house became unsafe, so we moved in the middle of the pandemic into a new little house and a new school. As it turns out, one-story houses are rare around here, so the one we found (after several months of house hunting) had to be entirely rewired and needed new HVAC and all new windows. This was a bit of a challenge financially, but definitely worth it. For a while she was admitted to the hospital for several days at a time each month, but thanks to her valiant team of doctors she’s on a new combo of meds that are helping to reduce seizures with fewer side effects. She still has around 8-12 seizures a week, but this is a vast improvement over 12-20 in a day.
Over the last two years Mal has lost a lot of her independence (no more tree climbing or ice hockey!), and at times has had trouble walking unaided. Being alone even briefly increases the risk of injury and SUDEP (basically SIDS, except more common, for people of any age with epilepsy), so we’ve unwittingly become helicopter parents. Her seizures can happen at any time, with no warning, though lately most have occurred at night. She’s had loads of stitches, staples, and black eyes, but remains fearless, funny, and plucky.
Luckily, she was recently approved for a seizure alert dog through 4 Paws for Ability in Xenia, Ohio. Her service dog will be trained to alert us when she has a seizure (this would be especially important when she’s sleeping), give comfort after a seizure, carry medicine and supplies, and provide balance support when she has difficulty walking. Mal would much rather be tailed by a furry friend than by her parents, and a seizure “Lassie” (an Epilassie?) will offer us all some peace of mind.
Training a service dog takes 2 to 2.5 years and costs $40,000 to $60,000. 4 Paws covers most of that cost, but we need to provide $17,000. Fundraising a portion of that fee would be a huge help, and we appreciate that you’ve even read this far more than you can imagine. If you have a few dollars to spare, we’d be very grateful.
Thanks very much for reading!