Jolene Vanuto is a dedicated nurse who has spent her career caring for others. When her son, Saber, was born with Dravet syndrome — a severe and rare form of epilepsy — she found herself using her nursing skills in a whole new way. She became not just a mom but also her son’s most important caregiver.

Dravet syndrome often begins in infancy and can cause frequent, sometimes prolonged seizures. Because the condition is rare, it can take time for families to learn how best to manage it. In Jolene’s case, her medical training helped her immediately understand what Saber needed. She knew that included closely monitoring him for any signs that a seizure might be coming on, sticking to a daily routine, and taking steps to avoid potential seizure triggers.

Triggers vary from person to person, but they may include factors such as bright lights, temperature changes, or overexcitement.

Timing and Teamwork

Jolene’s routine involves giving Saber his medication at the right times each day. She also observes his behavior and records any patterns she notices, such as when seizures happen and how long they last. This helps her and Saber’s doctors decide whether to make changes in his care. Jolene has learned that teamwork is vital, so she stays in close contact with his medical team, including neurologists and other specialists, who guide her on which treatments and strategies can help minimize Saber’s seizures.

Dravet syndrome can lead to unexpected emergencies, so Jolene emphasizes the importance of being prepared to call 911. Seizures lasting longer than five minutes or causing breathing difficulties can become life-threatening if not addressed promptly. In these moments, Jolene relies on both her nursing experience and her instincts as a mother to stay calm.

Jolene emphasizes that it’s always better to be cautious and call for help if you’re worried. She also reminds people to keep important details such as medication lists, doctors’ phone numbers, and any special instructions easily accessible. That way, emergency responders have all the information they need right away.

A Balance of Joy and Safety

Balancing Saber’s safety with everyday life can be challenging, but Jolene tries to keep his routine as normal as possible. For example, simple family activities allow Saber to enjoy the world around him without feeling isolated. Even small outings can feel risky, but Jolene believes that making memories and experiencing life are just as important as being cautious.

Jolene’s main message to other parents and caregivers is to trust themselves and speak up for what their child needs. She knows it can be scary to navigate a serious condition like Dravet syndrome, but she encourages people to ask questions, seek help, and never hesitate to call 911 in a true emergency. Jolene’s journey shows how a combination of professional knowledge, maternal intuition, and unwavering love can allow a child with severe epilepsy to live as fully and safely as possible.