This is my beautiful daughter Paige, otherwise known as the Princess Warrior. She is very deserving of the ‘warrior’ title as she has been through more in her 4 years of life than any adult should ever have to endure.
At 6 months of age, she had her first seizure which was associated with a fever. The following two months, additional seizure types developed: clonic, myoclonic, grand mal, absence, and complex partials, to mention a few. At 8 months of age, through genetic testing, she was diagnosed with Dravet Syndrome. It is also known as Severe Myoclonic Epilepsy of Infancy, which is a rare and catastrophic form of intractable epilepsy which occurs in roughly 1 in every 30,000 births. She will never outgrow this condition and it affects every aspect of her daily life, along with our family’s as well.
It is a progressive disorder characterized by multiple seizure types that are resistant to treatment, often including life-threatening status epilepticus. There are also multiple side effects of this syndrome which has impacted Paige. She has behavior and developmental delays, a lowered immunity; she has delayed speech, and difficulty sleeping, to mention a few. In addition, children with Dravet also face a higher incidence of sudden unexplained death in epilepsy.
To give you a little background on Paige, her development remained on track initially, then declined significantly at 19 months. This is when she became extremely ill with RSV, had over an hour seizure, her heart and lungs shut down and emergency ECMO surgery was performed. The surgery saved her life, but caused her to have a stroke. She lost the ability to walk, talk, and eat. It has been 2 years since her surgery, and I happily report, as you can see, she learned how to walk again. However, she has limited control of her left arm and her speech is significantly delayed, but she is making tremendous process! She attends therapies on a regular basis and continues to show us how resilient she is!
Paige having Dravet impacts every aspect of our life. The care she requires is intense.
- She requires high doses of medicines which are time regimented. (She currently takes 8 doses a day which are just her seizures meds.)
- We try and maintain her body temperature. She is ultra-sensitive and if her temperature rises above 99 degrees, she will have a grand mal seizure. Therefore, we sometimes have to use a cooling vest to keep her temperature down.
- She cannot be exposed to direct sunlight. We keep protective gear on her when outside.
- We ensure Paige receives ample rest to eliminate sleep deprivation.
- And it is of utmost importance to limit her exposure to illness.
On behalf of my family, thank you for taking the time to educate the public about Dravet Syndrome.
Thank you, Kristina Frate