*Thanks to everyone, we have met our fundraising goal! Freya will be getting her service dog in Spring/Summer 2025! Any additional donations that come in going forward will go to the maintenance/upkeep of her dog (vet costs, insurance, supplies, etc.)

Hi, we are Carly and Adrian, and are fundraising to get a seizure response/alert service dog for our 22-month-old daughter, Freya.

At 4 months of age, Freya had her first two seizures. She was diagnosed with an SCN1A de novo gene mutation and Dravet Syndrome shortly after. Dravet Syndrome is a rare (1:15,700) developmental and epileptic encephalopathy characterized by frequent and difficult to treat seizures and significant developmental delays. All of Freya’s seizures thus far have been status, ranging from 30-50 minutes in length. With this comes an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy) and permanent brain damage. Dravet is frustrating in its unpredictability. Seizure type and frequency can change at any time, and most developmental and motor/balance/gait issues begin to show and progress after the first year of life. As a spectrum disease, doctors cannot predict exactly how severe Freya’s needs will be in the future.

Freya takes medication 3+ times a day (up to 8x a day when we are battling an additional concern/risk) to keep seizures at bay. She is also on the medical ketogenic diet for epilepsy, where each bite of food is treated as her medication and meals are carefully weighed to the tenth of a gram in an exact ratio. We have an extensive 6-step rescue medication protocol to try to halt a seizure in its tracks, all typically administered by us before the ambulance arrives. During seizures, she also requires the use of suction and oxygen due to her stats dropping dangerously low (the high volume of rescue drugs required impacts breathing).

Freya has been through so much in her young life, and has had more than her fair share of ambulance rides, hospital admissions, IOs, blood draws, EEGs, EKGs, MRI, therapy appointments, etc. We are on diligent seizure watch literally every minute of every day (even during the night). So much of her life is restricted from that of a “typical” child. Her therapists and nurses have become our only visitors/friends. Our daily schedule revolves around strict medication and nap/bed times (often including blood glucose/ketone finger pricks and temperature spot checks). Meal and snack times must be well planned and closely monitored for accuracy. Activities are chosen with careful consideration of possible seizure triggers (i.e. heat, over-excitement, flashing lights, over-tiredness, etc.), risk of disease transmission (illness and inflammation lowers the seizure threshold), general seizure safety (i.e. injury from falling, secondary drowning while in water, etc.), and proximity to our rescue supplies and a hospital. It’s a lot to handle for a toddler, but it’s all she’s ever known. Yet Freya remains the sweetest and most joyful little girl. We are completely biased, but we take immense pride in how amazing she always is, through all of it!

As she is getting older, we would love to give Freya the independence that a service dog could provide (not to mention the peace it would bring to us as parents). The specially trained medical alert dogs can respond to a seizure, and potentially even pre-alert before a seizure begins. This would allow us to administer appropriate medications immediately to either halt a seizure or prevent one. The dog would sleep with Freya at night to alert us to any drops in her stats, thereby minimizing the risk of SUDEP. It could retrieve our rescue medication bag, allowing us to assess Freya, get her onto her side and call 911 in the meantime. It would also give her the freedom to feel “normal”, without an adult constantly hovering at arms length watching for the first sign of a twitch. Though there are plenty of other tasks that service dogs are capable of, these life-sustaining measures are the ones that jump out most for Freya’s condition. We want to take every measure to ensure that she stays safe, healthy, and happy, and we believe a service dog could help with all of this.

Dulebohn Service Dogs, a 501(c)3 nonprofit with over 30 years of experience, will select and extensively train Freya’s new partner, and provide the 1:1 support we’d need to get us all situated. We are excited because Dulebohn is not only reputable, but known specifically for their success in the seizure alert aspect of training, and they come highly recommended by several other Dravet families (among others). As you might imagine, the training invested in these dogs makes them quite expensive. An initial deposit is required for them to begin the search/training, the second deposit is due when the dog begins its advanced training, and the final payment is due just prior to delivery.

We thank our family, friends, friends of friends, and community for their constant love and support. Words truly cannot describe our gratitude. Freya is so lucky to have such an amazing village rallying behind her!

#FreyaFierce (follow on Facebook!)

#CureDravet

*Since GoFundMe takes a portion of the profits, we want to mention that personal checks can also be sent directly to Dulebohn Service Dogs (15473 Cemetery Rd. Wapakoneta, Ohio 45895), so that the full amount of your donation can go to her dog (be sure to note “Freya Barragan” in the memo line). Given that they are a 501(c)3 nonprofit, they can also give you a letter for your tax deductible donation upon request.