Helping Raina stay safe from SUDEP
Donation protected
I am asking for help fundraising for my daughter Raina.
Raina is a bright, happy, beautiful (almost) five year old who was recently diagnosed with Continuous Slow Wave Sleep Epilepsy, aka CSWS/ESES.
ESES is a rare epileptic condition, and not much is known about it. What we do know is that it causes Raina to seize through over 85% of her slow wave sleep. This form of epilepsy is resistant to medication, causes brain damage, learning impairments, but Raina has continued to overcome every obstacle that has come her way. Raina also has Autism Spectrum disorder, making it hard for her to communicate when she is having more frequent seizures.
In ESES patients, they seize through sleep, usually without any obvious seizure activity until the children get older. Raina has recently started having more convulsions in her sleep, where she previously did not. In order to keep Raina safe from Sudden Unexpected Death in Epilepsy (SUDEP) during her sleep, we need to equip her bedroom with a monitor designed to detect seizures in her sleep, anti suffocation pillows, breathable rails for her bed, as well as floor mats and safety equipment (such as head gear) for when she plays. Any extra money will go to things such as weighted blankets, sensory toys, and travel expenses for her medical appointments.
In order to keep Raina safe from the dangers of SUDEP and to help her get the things she needs to grow.. We are asking graciously, as a family, if anyone is able to donate or even take the time to share, please do.
Raina is a bright, happy, beautiful (almost) five year old who was recently diagnosed with Continuous Slow Wave Sleep Epilepsy, aka CSWS/ESES.
ESES is a rare epileptic condition, and not much is known about it. What we do know is that it causes Raina to seize through over 85% of her slow wave sleep. This form of epilepsy is resistant to medication, causes brain damage, learning impairments, but Raina has continued to overcome every obstacle that has come her way. Raina also has Autism Spectrum disorder, making it hard for her to communicate when she is having more frequent seizures.
In ESES patients, they seize through sleep, usually without any obvious seizure activity until the children get older. Raina has recently started having more convulsions in her sleep, where she previously did not. In order to keep Raina safe from Sudden Unexpected Death in Epilepsy (SUDEP) during her sleep, we need to equip her bedroom with a monitor designed to detect seizures in her sleep, anti suffocation pillows, breathable rails for her bed, as well as floor mats and safety equipment (such as head gear) for when she plays. Any extra money will go to things such as weighted blankets, sensory toys, and travel expenses for her medical appointments.
In order to keep Raina safe from the dangers of SUDEP and to help her get the things she needs to grow.. We are asking graciously, as a family, if anyone is able to donate or even take the time to share, please do.
Organizer
Austin Lewis
Organizer
Homer, NY
