Centre County family navigates daughter’s rare condition, fundraises for service dog to help

At just four months old, Freya Barragan’s diagnosis of Dravet syndrome thrust her family into a roller coaster of adaptation and constant learning.

Freya, now two years old, has remained the sweetest little girl, her mom Carly Barragan said. She has showed resilience in the face of a tasking routine, taking medication over three times a day and maintaining a strict diet under 24-hour supervision.

“She was born perfectly healthy, everything normal. And so when she had her first seizure, it was completely out of the blue. We didn’t even really know what was happening as first-time parents,” Barragan said.

Dravet syndrome is a rare and severe form of epilepsy that typically begins during infancy and entails frequent and difficult-to-treat seizures and significant developmental delays, among other challenges. There is currently no cure, and the family is fundraising in the hopes of getting a seizure response/alert service dog that can help.

In their home in Julian, there is an area equipped with tools such as oxygen and seizure response medication for rapid seizure response and another for her strict medical ketogenic diet.

“When seizures happen, they are very bad. There’s been several times where I thought we were gonna lose her,” Barragan said.

From becoming frequent fliers to hospitals like Penn State Health Children’s Hospital in Hershey to having in-house nursing staff, Barragan and her husband Adrian have undergone several lifestyle changes since Freya’s diagnosis.

Barragan’s parents relocated from Colorado to Pennsylvania almost a year ago to support the couple. Freya’s grandparents live in a small house on wheels in front of her home, helping provide meals and do housework for the busy couple in hopes of providing moral support and playing a larger role in Freya’s life.

“(We’re) just an extra set of hands and people here to love and support everybody,” Carly’s mom, Leslie Marcantonio, said. “We just kind of have to go with the flow and do what we can to be flexible and to just be with Freya too, just to see her grow.”

For Barragan, it takes a village. From coworkers to neighbors, she expressed gratitude for those eager to lend support, particularly before her parents’ relocation.

Brenda Romanini, one of their day nurses, commended the Barragans’ efforts in increasing Freya’s chances of positive outcomes as she navigates the unpredictable condition, fostering a loving and caring environment with well-orchestrated nursing care.

“They’re living on eggshells, waiting for the next seizure that could cause permanent neurological damage or death. What a heavy weight on a family,” Romanini said. “It’s just all encompassing every minute of your life.”

Barragan said that, given the unpredictability of Dravet syndrome, doctors are unable to tell her how the condition will evolve.

With constant concern about her condition plateauing or worsening, Romanini said she and the nursing staff try to emotionally support the family and empower Freya, in addition to caregiving.

Part of that empowerment includes trying to give Freya some independence as she grows older. They’re hopeful that a seizure response service dog for Freya would supplement the 24-hour supervision she requires.

The medically trained dog would have the ability to respond to seizures and potentially alert someone before one begins, allowing for immediate medication administration. By sleeping with Freya at night, the dog would provide vital monitoring, assist in emergencies and grant her the freedom to feel “normal” without constant adult supervision.

“The service dog would just be very helpful and give extra security and peace of mind for the (Barragans),” Marcantonio said. “We’re hopeful that with this service dog, it will give some freedom to not only the kids, but Freya as well as she grows older.”

In addition to giving both Freya and her parents’ freedom and relief, Barragan is hoping the service dog can become a friend for Freya, forming a bond that makes her feel safe.

Romanini described Freya as highly perceptive and intelligent, communicating in English, Spanish and sign language and already trying to do things like wash her hands on her own.

“Freya’s gonna be out in the community, and she’s gonna be a good little citizen for everyone ... she’s gonna be a good friend to everybody,” Romanini said. “She has the most genuine and kind heart and the greatest sense of humor .... she makes me laugh every day.”

As Freya grows older, her care team is committed to raising awareness for the condition via the Facebook page “Freya Fierce” and promoting the Dravet Syndrome Foundation, which Barragan said does incredible work fundraising and advocating for research in hopes of finding a cure.

“They are researching for a cure, and there is some promising research. So we are holding hope that at some point, hopefully in Freya’s lifetime, there might be a cure or better treatment,” Barragan said.

With 28 donations, the family has raised about $6,500 of their $26,500 goal for a service dog. Those interested in contributing can donate on GoFundMe or send personal checks directly to Dulebohn Service Dogs at 15473 Cemetery Rd. Wapakoneta, Ohio 45895, with “Freya Barragan” in the memo line.