Our precious daughter Remi is having seizures and the doctors don't know why or if they can cure her. We are asking for donations to cover what our insurance doesn't and  loss of wages. We have been taking turns staying with her in the hospital but now, we have both run out of sick and vacation time. This is particularly difficult for my wife who is seven months pregnant. 

Friends and Family, if you wish to donate, please contact us directly.


This started January 27th. Remi was playing in the living room. She suddenly fell over and started convulsing. We took her to the ER and while waiting, she seized again.  We were told her seizures were caused by an ear infection and high temperature. The doctor explained to us that is was how quickly her temperature rose that caused her febrile seizures. We were given a prescription for antibiotics and sent home. 


For five days Remi was taking her antibiotics and behaving normally. Then she had another seizure. Our second trip to the ER revealed nothing.  She no longer had a fever or an ear infection.  Some tests were run - a CT scan and an EEG. Both found nothing. They wanted to do  an MRI but were unable to at the time. After three days in the hospital we were discharged. She was prescribed Keppra and to do the MRI as an outpatient procedure. 


Three days later we were back in the hospital after more seizures. This time, it was worse. She'd been taking her anti-seizure medication as prescribed. She had twice as many seizures as before. More tests. Another EEG. An MRI and Spinal Tap. Again, nothing. After two days in the local Pediatric unit, we were transferred by ambulance to a specialized children's hospital in Los Angeles for more tests. A 30 hour EEG and blood tests later, still no answers. They changed the dosage of her anti-seizure medication and sent us home.

Eight days later the seizures started again. We had called her neurologist to let her know what was happening and she prescribed a second medication - Onfi .  Granted, we were  told that this medication would take some time to help with the seizures. After alerting her neurologist to the fact that the seizures seemed to be getting worse, she advised us  to take her to the local  ER. We were admitted to the Pediatric unit a lot faster this time. They performed another EEG which did not really yield any new results. The local Pediatric unit told us there wasn't much more they could do, and we were transferred back to UCLA within 2 days. Her seizures continued to worsen. On  the second day at UCLA, she had 11 seizures while on two different medications. Thankfully, over the course of her 6 day stay at UCLA they were able to get her seizures under control by adding a third medication - Zonisamide. It was here that we were told that even with being on the three different medications at the therapeutic dose that  she may still have seizures. That her development may be hindered. On top of all of this, we still have no idea what is causing the seizures. All of her tests came back normal.


We met with her neurologist Monday following  being discharged from UCLA. The doctor believes it could be Doose Syndrome . If her seizures continue  then we may  have to adjust her medication and/or put her on a ketogenic diet. 

If we have to change to a ketogenic diet she will have to be hospitalized again for a week. Since she is so young, she will have to be monitored during the adjustment to the keto diet. This will require one of us to stay in the hospital with her. We don't know how we will afford more missed work.



*Updates
To be honest, at this point, we thought we were in the clear. The medication seemed to be working. Our daughter was acting like herself before any of this happened. However, yesterday she had two more seizures. The doctor adjusted her medication. We're hoping this adjustment works.

²From last week, Thursday to Sunday, Remi has had nine seizures. It seems the medications aren't working.

Please consider donating. We don't know how long it will take but, we know financially, we're running out of time.