For A Life Without Seizures: MY STORY

Hi! I'm Philippe, I'm 3 years old. I have an awesome family! Mom and Dad love me so much, and so does my little sister and puppy.

When I was born I wasn't breathing. I was blue and purple and completely limp. After 1-2 minutes of resuscitation I finally started breathing and everything seemed fine. I soon smiled and laughed for mommy and daddy. I learned to roll over, and to grab toys with my hands. I was learning to sit up but couldn't quite do it all by myself yet...

one of my stays at Primary's

When I was 5 months old one day I went stiff, I started shaking, breathing funny, and my eyes were stuck to the side for a few minutes. Mommy and daddy took me to the clinic hoping it was nothing, but then it happened again and the doctor said "Go to the ER, NOW! We'll call and pre-register so you can go right back when you get there." This was the first of many hospital visits. All the milestones I had reached were suddenly gone. I couldn't hold my bottle anymore. I didn't even realize I had arms or hands anymore, they would just hang limp at my side.

For several months, the doctors didn't know what was going on, and didn't have any answers. Later I was diagnosed with seizures and infantile spasms. I was prescribed a seizure medication but it didn't seem to help me, it only made me more sleepy, grumpy, and spaced out. I was just a very quiet, life-less baby. Mommy started doing physical, speech, and occupational therapy with my every day. Therapists came to our house almost every day, and mommy also took me to a clinic to see even more therapists. I hated all the therapy, but it helped me a little bit.

$72,947.52 (x4) medicine my mom injected in my leg

The next summer I started a new (extremely expensive) medication that was made by a private company out in Florida. Scientists have found a way to synthetically create a chemical used in the brain. It was a steroid based medication and basically mommy would give me injections in my leg for a few months. I was so much more aware and responsive, I WAS USING MY HANDS AGAIN!!!

The treatment cured me from my infantile spasms, but I still have seizures. I've been on the Ketogenic Diet for 2 years. My seizures fluctuate a lot. Some months I've only had one or two, but most months I've had 7 to 11 seizures. They happen when I wake up in the morning and last 20 minutes. Then I sleep for 3 or 4 hours and I'm grumpy all day. I hate days when I have a seizure.

these were my medical bills one month in 2010

Slowly but surely I've been able to reach some milestones. Every Christmas I've given my parents a big present: I started crawling on Christmas day 2010, and Christmas 2011 I tried walking!