As a grandmother of five this project touches my heart more than you will ever know. Thirteen years ago I lost, what appeared to be, a perfectly healthy grandson to Sids. He was a robust little blond headed boy with these huge blue eyes. The day before I took him to the doctor for his check up ....we laugh and the doctor kidded me about how healthy he was...That night his dad took him back to his home in Missouri and by noon the next day he was gone. He went to sleep and never woke up again. My son was nineteen at the time, and this was the love of his life....He never went anywhere that his son was not there with him. But we lost him to, what was that time a mystery disease...My son said we lost him to the devil.
What does this have to do with Seth and Grace? I read Seth's blog this morning and then I read it many more times and then I dropped him a line and told him how I would like to write, as best I could. about Grace and her disease and Seth and his battle to save her. You see Grace has Rasmussen's encephalitis. Less than 200.000 people world wide have this disease. "It 's a rare neurological condition that impacts children primarily under the age of 13 rendering them paralyzed on one side and experiencing incurable epilepsy. In many cases 1/2 the brain is the only solution to the uncontrollable seizures" According to The National Organization for Rare Disorders. (NORD) http://www.rarediseases.org/ only 200 out of 7000 rare diseases have drugs approved by the FDA for treatment. Well what do the other 6800 do? I am afraid to ask. Yes, our federal government has provided us with the Orphan Drug Act in 1983 but the success rate is doubtful and more needs to be done.
I urge you to check this disease and Seth and Graces' journey for help and a cure all documented beautifully by her dad on his blog. Check him out in Facebook and No, you have not heard the last from me on this. I just have to do some additional research to send it your way....My prayers are with you two, keep up the good work. Those smiles are worth a million. Love Pokie