Updated July 4, 2000

Christien's Story


Christien's Story - submitted by his mom, Sally


\ My name is Sally and my son's name is Christien. My son has been diagnosed as having Subacute Sclerosing Panencephalitis. This disease has an incidence of .06 per 1,000,000 people in the US. I am from Canada.

Christien was born September of 1990, 3 months premature and weighed a whole 2lbs 2 ounces. I thought I had lived through the worst then. After a year of breathing difficulties Christien was a completely normal active child until he was 6 years of age. His teacher noticed staring spells and asked if he suffered from seizures. I took him to see a pediatrician and was told they would humor me and do an EEG, which showed seizures in keeping with Epilepsy. His seizures continued to get worse and I don't think there are too many types of seizures that Chris has not had.

It took us two years to finally have Christien diagnosed. SSPE is an extremely rare form of encephalitis caused in this case by his measles injection. He received his vaccination in May and by November the symptoms were too obvious not to notice. Funny vaccinations are supposed to stop these conditions and look what it did! Unfortunately the outcome in with this form of encephalitis is death, usually within 3 years for 80% of its victims. 20% live for 10 years. Information on this disease is very difficult to find. The symptoms are the same in most cases as other forms of encephalitis.

My son was 7 years old when this disease struck him. Christien is longer able to talk and relies on a wheelchair. He is very ataxic. His brain doesn't recognize the right side of his body. Christien is now also incontinent. They tell me his condition will continue to degenerate until a decreased level of consciousness comes and eventually coma. I am a single mom who now can no longer work outside of the home due to Christien's condition. He is so ever changing it is very difficult to predict when he will have good days. My son, like myself, is very stubborn and I know as long as he can, he will continue to fight this horrible disease.

If anyone knows of someone who suffers from SSPE please have them contact me. I would love to hear from everyone out there, there really is not a lot out there to help me.


Sally and Christien