Caregiver Stories
Brandt Platt What are some of the biggest challenges you’ve faced as a caregiver? Our journey didn’t start with a name; it started with a 911 call. For the first two months of Millie’s life, everything was perfect. Then, the seizures began. As a Fire Fighter and Paramedic, I’ve spent my career responding to emergencies, […]
Adel Bounif France Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? My daughter is called Manel. She was a baby when she had her first seizure at 8 months. The seizure lasted nearly one hour. At first, doctors didn’t say that it was epilepsy but one month later, she
Nicola Maskell United Kingdom What are some of the biggest challenges you’ve faced as a caregiver? The upset of seeing my child going through what he went through. How has Dravet syndrome impacted you and your family’s daily life and routine? It took over our daily life and routine. What advice would you give to
Lindsay Brim Orlando, Florida Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Even though I had a complicated pregnancy with twins who were born at 33 weeks and spent 29 days in the NICU, we were completely shocked when our daughter had her first seizure at 6 months old.
Melissa O’Bryan Martinsville, VA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Our son had his first seizure at 6 months old. Then at 11 months, he had a cluster of seizures that resulted in us being medevaced to a larger hospital. A range of tests came back inconclusive
Brianne Trechter Spokane, WA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? The Dravet diagnosis hit us like a ton of bricks. After multiple seizures and hospitalizations I had been doing my own research and come across Dravet Syndrome. I had a strong gut feeling that it was what
Erin Frost Apex, NC Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? When Mia was about 2.5 years old- the team ordered genetic testing since nothing was controlling her seizures. And they kept getting worse. Just before turning 3 years old, we found out that Mia had an abnormality
Kayci Capps Herculaneum, MO Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? William, an otherwise perfectly healthy baby, had his first seizure at 3 months old. After several hour-long seizures following this, we did genetic testing and discovered our sweet baby had a genetic condition known as Dravet Syndrome.
Jen Marasco-Kuhn Verona, PA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Our journey mirrors that of many other rare families, moving from the joy of a newborn to the shock of an unexpected medical event, and then to the frustration, fear, and uncertainty of navigating an unfamiliar and
Sarah Reyes Allen, Texas Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Hayden Stella Reyes was a healthy 5 pounds 11-ounce little girl born on March 25, 2014. She was just four months old when she had her first seizure. We were getting her ready for her second day
