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Brothers Fight with Dravet Syndrome (Micah and Elijah's Story)

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This fundraiser ended on 07/31/13

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Raising money to help Micah and Elijah Lowe's medical bills during their struggle with Dravet Syndrome

Micah( 4 year old) and Elijah Lowe (2 year old) are brothers with a history most consistent with Dravet Syndrome, or severe myoclonic epilepsy in infancy. Children with Dravet Syndrome experience episodes of recurring febrile status epilepticus. They also can experience prolonged seizures without fever.  Micah and Elijah has a history of refractory status epilepticus since they were 6 months old.  They have been hospitalized on numerous occasions and have even required intubation and respiratory support during their prolonged seizures. Micah has been treated with multiple anti-seizure medications and all them seem to make his seizures worse. Therefore, Micah and Elijah are being treated with the Ketogenic diet at Mayo Clinic in Rochester, MN. The Ketogenic diet is a medical nutrition therapy. It requires precise measurements of all foods with a gram scale. It also requires 100% compliance from the child and care providers to be able to maintain therapeutic levels of ketosis. The Ketogenic diet is a well-established treatment for intractable epilepsy. Unfortunately children with Dravet Syndrome have difficulties in getting accepted in a daycare. Daycare providers are uncomfortable with the frequency, severity and duration of their seizures. Furthermore, preparation for the foods for the Ketogenic diet requires several hours of intensive preparation every day. This typically cannot successfully be provided in a daycare setting.  Micah was also diagnosed with autism in December and he has some delayed developmental problems some of which are also related to Dravet Syndrome.  Micah needs intensive behavioral therapy and behavioral interventions for 20 to 25 hours a week. We are asking for your help to pay our outstanding and current medical bills, traveling expenses to Mayo Clinic Rochester, MN three times a year since we live in Missouri and Micah’s autism therapy. Your help and support will be greatly appreciated. 

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