A Message from Chelsea (Mom)

My heart is so full of gratitude, She was first diagnosed this last Oct, the difference in her life before and her life now just a couple months later is heart breaking. She was energetic, goofy, fun, and full of life. Now she is in bed most of the time, in pain several times a day, in and out of ER a couple times every week. And cognitive skills are often not working right. To dizzy to walk alone, hard to concentrate. And body aching ALL the time. Not only did this Trigeminal Neuralgia cause her to have to take many many medications. Most are licensed for . . .

ADULTS. Those medications have major side effects. And negative interactions between the drugs. She's also been allergic to a few, but we have to take them anyway just accompanied by benadryl. She started having complex migraines shortly after th TN appeared, they are sometimes full body excruciating pain and other literally paralyzing her. She can't see, hearing gets hard and tongue numb. Her left side of her body gets paralyzed. It mimics a stroke. She has not attended school since October. Only a couple days here and there. Surgery will be our last option. It is just to high risk and morbid. Philadelphia is #1 children's hospital. We need to get her to their neurology unit. If we do decide to do the surgery we will be going back to Phili for that procedure as well. These are both rare conditions. And even more rare in children. Primary children's has been great helping play with medications. But we are out of options here. Our hearts are full with gratitude from all you guys have done. "Thank you" simply is not expressive enough.