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Hello, this is Archie but he thinks his real name is "Bum Bums". He is 20 months old , and since he was five months, he has been fighting Dravet Syndrome. It's a rare, catastrophic form of epilepsy characterized by prolonged seizures that are resistant to medications, severe developmental delays, speech and motor difficulties and a high risk of SUDEP. His chances of dying from SUDEP (usually at night) are 20-30%. There is currently no cure.
Our story
- At 6 months old, I woke up to him having a tonic clonic seizure. First, I thought it was your simple febrile seizure-except he wasn't stopping. After 10+ minutes, we frantically scooped him up and drove him to the ER, where they called his first Code Blue. This seizure lasted almost 40 minutes, even with several rounds of heavy duty "rescue" meds.
- Same thing happened a month later, hour after his vaccines. At this point, I knew these were not just regular febrile seizures and we asked for genetic Epilepsy Panel test.
- While waiting for the results (over two months), he had more 30+ minute long seizures. Two were triggered by swimming in the pool. We still don't know if it's the temperature change or the reflection of light on the water but we are done with pools for now.
- We were "stable" until all hell broke lose in April of '25, when he contracted Covid. We were feeding chickens in the backyard and he started to play with water in their drinking bucket. I was watering my plants and was not facing him. Next thing I know, I see him seizing and drowning face first in 4 inches of water. We called 911 and spent few days in the PICU. After Covid, he developed new type of seizure (and I think it's the worst possible one there is)-Atonic, also known as "drop" seizure. He'll be walking, eating or playing and suddenly falls down face first. Best case scenario is his head "bobs" little bit. As you can imagine, this is less than ideal because he can seriously injure himself. He's had MANY bruises and bites through his tongue and lip. Despite all of that, he always gets up like nothing happened!
Life today
On a bad day, Archie can have over 100 "face plant" seizures, which makes it hard to do anything. Our morning routine consists of driving to the grocery store, so I can keep him contained in the stroller and make it seem like we have an activity. In the afternoon, we go for a walk or the zoo and I carry him in hiking carrier. When we get home, we're confined to one area of the house that has carpet, or we read in bed. Typical toddler activities, such as water table play, sandbox or climbing at the playground are out of the question. As if things weren't bad enough, Archie's seizures are triggered by sunlight, heat, excitement, sensory overload and even breeze. Imagine my surprise when he was consistently having seizures while I was holding him while opening the freezer. It's cold AND exciting in there!
How Your Help Will Be Used
We found a breeder of Standard Poodles who has a great track record of producing many dogs who went on to become Service and Therapy dogs. We are hoping to send this puppy off to training so he can become a Seizure Detection dog and warn us of impending seizure, but also assist by retrieving rescue meds and softening his falls by positioning himself in front of Archie. Despite high tech seizure camera and pulse oximetry, night time is very scary for us because his seizures don't terminate themselves on their own (he always requires several rounds of rescue meds and a 911 call). We sleeps in our bed, but we lay him down knowing that SUDEP (sudden unexplained death in epilepsy) could take him from us anytime. My hope is to move him into his own bed he would share with Doggo (but still in our room) and he would alert us.