Help 3yr old fight rare epilepsy

My name is Kristine Savage, and my husband, Bill and I, are the proud parents of the sweetest 3yr old boy named Conner, CJ for short. April 9, 2017 is the day our world was torn apart. CJ woke up to his first ever seizure. We frantically called 911 and were admitted into the hospital. They hooked CJ up to an EEG. Within two minutes, he had his second seizure. How could this be possible? Then we heard that horrible word...epilepsy! Epilepsy? How does a healthy 3yr old boy wake up one morning with epilepsy? We just don't understand.

Over the next 6 weeks, we've been admitted to the hospital four times already. CJ is progressively getting worse. His seizures have went from full body tonic clonic to drop seizures with myoclonic twitches. He's been having around 50 seizures a day. We have tried many medicines, but unfortunately, a lot of them haven't worked, or have horrible side effects. Neurologists believe he has Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome. It's a syndrome found in early childhood that's difficult to treat. This is most likely why medication has been resistant so far.

Unfortunately, I had to take an unpaid leave of absence from my job to care for Conner. The medical bills are starting to come in. We also just started genetic testing for more specific answers so CJ can be best treated, but insurance is only covering some of the costs, leaving us with a hefty bill on top of the others. CJ is also in need of an epilepsy helmet to keep him safe so he can play outside and just be a kid. He also needs an epilepsy pillow. The brunt of his seizures happen while waking up from sleep, so the pillow will help him not suffocate in case we don't hear him in the middle of the night.

CJ's doctors would also like to send us to the Children's Hospital of Philadelphia to teach us the ketogenic diet. Just travelling there will prove costly. Then we'd need to have hotel accommodations and we'd have to provide the food they teach us to cook. It's an expensive process, but worth it if it helps keep him seizure free.

There's an old saying, "ask for help, not because you're weak, but because you want to remain strong." This is exactly what we're striving for, to remain strong and fight this disease with every fiber of our being. CJ is the sweetest little boy ever. He keeps asking us if he's going to get better...yes, my peanut, you will...please help us help Conner. Thank you!