Probably Wondering What's New...?

Well, I guess we're not out of the woods on this Pelizeus-Merbaucher Disease. In fact her neurologist thinks it's for sure and he says he hopes to be proven wrong. I have been on the phone with people across the country and way out of my intelligence bracket trying to find some answers on where to go from here. And this is what I have come up with at this point. Although we have not had a diagnostic test, Sydney has all the symptoms of PMD. I will have more tests done, but this is such a rare disease there isn't too much information. There are 250 cases in the USA and about 2,000 known worldwide. At this point we are trying to treat her symptoms. That is more important that putting a label on her. We have got to stop these seizures. Then, we need to get her nutrition going as strong as her body will allow. We need her to stop vomiting. These thing are on the top of our priority list right now. I have found a family support group that has been able to answer some big questions for me and point me in some direction. This will be a saving grace. There is "one" Doctor who specializes in this rare disease and other similar diseases. I talked to him last week. Thank you everyone for your prayers and support. Please keep Sydney in your prayers. Love, Amber