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Rayleigh's Story

Written by Samantha Navarro

Rayleigh is 18 months old and full of love and energy. She is always happy, sassy and very independent. She was born on 9/18/2017 at 40 weeks +2 days. She was a beautiful and healthy baby girl. She isn’t a typical 18 month old. Rayleigh has a rare catastrophic lifelong form of epilepsy called Dravet Syndrome. However, unless you have seen her have a seizure you would never know she has epilepsy. She had her first seizure a year ago when she was only 7.5 months old. The seizure lasted 45 minutes and we were terrified. She had to be intubated. At this time I felt helpless and heart broken. During intubation the hospital staff called the chaplain. I fell apart. What was happening to my baby?!? Why is the chaplain coming to talk to us?! Is my baby going to live? God, please save my baby! My heart cannot stand losing her. The chaplain came and prayed with us and comforted us through this time. I believe our prayers saved my baby. She was finally stabilized and flown to Children’s where she spent time in ICU. Rayleigh underwent blood testing, a lumbar puncture, an MRI and an EEG. It was the scariest time of our life. It wasn’t until she was 13 months old and 6 prolonged seizures later (all lasting 45mins-1.5 hours) that genetic testing and a blood test confirmed her diagnosis.


Photo Courtesy of Rayleigh's Road with Dravet Syndrome


We found out that Rayleigh is a carrier of the SCN1A genetic mutation. Which is de novo (new mutation). Never in a million years would I have guessed Dravet Syndrome. Common issues with Dravet Syndrome include prolonged seizures, frequent seizures, behavioral and developmental delays, growth and nutrition issues, sleeping difficulties and chronic infections (these are just a few). Developmental delays are often not evident until the second or third year of life. At this point Rayleigh has had about 10 seizures most requiring intubation, Careflite rides and PICU stays. I thought that it would get easier but it doesn’t. In fact it kills me to see my baby like that. Rayleigh is on Keppra three times a day. She also has to take Klonopin when she is ill and has Diastat for emergencies. She does not have any delays as of now. Praise the lord!

Photo Courtesy of Rayleigh's Road with Dravet Syndrome

Rayleigh and all of her Dravet Warrior brothers and sisters are struggling, and we need a cure for our babies! We need answers. I am trying to raise awareness for Dravet Syndrome/epilepsy! Current treatment options are limited and constant care is required for someone suffering this syndrome. We need research for a cure and hope for a better quality of life for our loved ones. I am asking you to please help spread awareness! I would love to raise funds for the Dravet Syndrome Foundation. I would love to get answers. I would also love to raise funds for DS families as well. I know many of us as families have to take time off of work to be there for our children and it puts us all in financial binds.


Photo Courtesy of Rayleigh's Road with Dravet Syndrome

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