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This is Scarlett, our granddaughter and the young child of our son Aaron and Sarah,
She is everything anyone could ever ask for in a little girl and more. She loves animals, learning new things, she's very independent, her favorite color is rainbow and she has a great imagination.
Scarlett has Dravet Syndrome. This is a very rare and aggressive Epilepsy that can effect multiple parts of a person's development, and daily life. Just for example Scarlett only gets to go outside to play a few times a year right now, one of her favorite things of course. When she does it's almost always less than 30 minutes because her body doesn't regulate body temperature correctly. By definition Dravet is much more difficult to treat and control with standard seizure medications. Scarlett's seizures as well as many other Dravet kids seizures have been known to last 30-60 minutes, some have longer seizures or many multiple seizures daily. Even if you get some seizure control there is usually a quality of life trade off because of medication side effects and complications that go along with the syndrome. There are alot of Dravet kids with severe delays, motor skill impairments, g-tubes to eat and 10-20% don't live to see adulthood. Everyone around Scarlett wants to try everything possible to reduce these risks.
Her parents have made a decision to explore another avenue in conjunction with standard medicine to see if it will help. The problem is it's very expensive and insurance doesn't cover it.
We hope that people will help us in our quest to minimize the risks, hopefully alleviate some of the side effects she experiences now and build towards a better quality of life for her tomorrow. We greatly appreciate whatever you can afford it will be tremendously beneficial for our little girl.
Thank you
From Scarlett
And our family
She is everything anyone could ever ask for in a little girl and more. She loves animals, learning new things, she's very independent, her favorite color is rainbow and she has a great imagination.
Scarlett has Dravet Syndrome. This is a very rare and aggressive Epilepsy that can effect multiple parts of a person's development, and daily life. Just for example Scarlett only gets to go outside to play a few times a year right now, one of her favorite things of course. When she does it's almost always less than 30 minutes because her body doesn't regulate body temperature correctly. By definition Dravet is much more difficult to treat and control with standard seizure medications. Scarlett's seizures as well as many other Dravet kids seizures have been known to last 30-60 minutes, some have longer seizures or many multiple seizures daily. Even if you get some seizure control there is usually a quality of life trade off because of medication side effects and complications that go along with the syndrome. There are alot of Dravet kids with severe delays, motor skill impairments, g-tubes to eat and 10-20% don't live to see adulthood. Everyone around Scarlett wants to try everything possible to reduce these risks.
Her parents have made a decision to explore another avenue in conjunction with standard medicine to see if it will help. The problem is it's very expensive and insurance doesn't cover it.
We hope that people will help us in our quest to minimize the risks, hopefully alleviate some of the side effects she experiences now and build towards a better quality of life for her tomorrow. We greatly appreciate whatever you can afford it will be tremendously beneficial for our little girl.
Thank you
From Scarlett
And our family