On the night of July 8, 2019, our son, Teddy, was frantically driven to the emergency room
barely conscious and unresponsive. As an off-duty EMT took a bluish grey Teddy out of his father’s arms
and into a trauma room, he began to seize. The seizure activity would continue to ravage Teddy’s brain and body of the course of the next 6 hours. He was hospitalized for almost a week with a transfer by ambulance to Monroe Carroll Children’s Hospital at Vanderbilt 2.5 hours from home. The neurology
team had very few answers for us as we entered this terrifying new territory of EEGs, MRIs, medicines,
and seizure plans.
In March 2021 Teddy was diagnosed with the rare genetic mutation KCNB1 after an epilepsy
panel cheek swab. A follow-up EEG showed slowed brain waves consistent with his other diagnoses of
Global Developmental Delay, Oppositional Defiance Disorder, cognitive disability, sensory disorder,
severe ADHD, and suspected autism. Despite all of these labels and diagnoses, Teddy is a sweet child
who loves Hotwheels, singing, and building Lego creations. He learned how to ride a bicycle last year
and can finally swim without a floatation device. He has a large team of doctors and therapists that work together to keep Teddy as healthy, happy, and balanced as he can be.
The diagnosis of KCNB1 was both liberating and devastating for us as Teddy’s parents; liberating
in the sense of jumping off the hamster wheel of fitting a square Teddy into society’s round hole, but
devastating as we realized the gravity of his future with epilepsy. When a seizure starts in Teddy’s brain it doesn’t stop without emergency medical intervention. His seizures are rare for now, but as puberty approaches epileptics typically see an increase or change in seizure activity. Because every seizure for Teddy is a life-threatening emergency, we must monitor Teddy at all times. He has an alarm on his bed and is a beta tester for a seizure detection app through a research study at Johns Hopkins. Teddy cannot bathe alone. Teddy cannot play alone outside. Teddy should not be alone for more than five minutes. 4 Paws for Ability is going to change all that for Teddy. With a seizure alert dog, he will be able to bathe in privacy, play outside independently, and ride his bike up the street to play with friends. A service dog from 4 Paws will give Teddy an edge when puberty comes knocking and seizure activity changes for better or worse. His dog will also have special training to interrupt unreasonable behavior responses to stressful stimuli.
We have started the process while he is still only 8 years old due to the time it takes to breed
and train a service dog. After meeting our fundraising goal of $17,000, we will be put into the next available training class at 4 Paws which is at least 2 years away. Please consider a donation to 4 Paws for Ability for Teddy’s service dog. In a world where you can be anything, choose to be helpful. We appreciate any and every penny on behalf of our KCNBrave1. Thank you for your generosity, prayers, and support as we navigate the long path ahead.
How can YOU help Teddy?
Donations in support of Teddy should be made directly to 4 Paws for Ability – be sure to write
Teddy’s name on the memo line. Mail checks to:
4 Paws for Ability
In Honor of Teddy Miller
253 Dayton Ave.
Xenia, Ohio, 45385.
If you wish to make an online donation, the website is www.4pawsforability.org/donate-now. Include Teddy’s name in the memo line so that the amount is credited to his account.