Friday, February 19, 2010
What's going on?
Anaya Xanthe Delia, born August 2009, has recently been unofficially diagnosed as having a demyelinating myopathy for which the cause is unknown. She wasn't meeting her developmental milestones as she should and has been very irritable. We took her to see our local pediatrician in emergency as she began having difficulty breast feeding and was choking and gasping. Upon examination we were told to take Anaya to the Children's Hospital for further testing.
The care Anaya recieved at the hospital was awesome. I think she was seen by almost 20 different doctors and specialists within the first 48 hours of arriving. We stayed by her side for two weeks as numerous tests were preformed. Many of her tests came back healthy and normal. The MRI of her brain did not.
The MRI showed areas of low myelination in her cerebellum and brainstem and throughout her cerebrum. The docs wanted to do additional tests including muscle and skin biopsies- which were conducted and sent away for testing (no results yet).
We have been told that this is likely a brain disease caused by a genetic mutation. That there are no conventional treatments or surgery options. That it is likely degenerative and palliative. This means they expect her to get worse and die. We have not been given a timeline nor do we know how this may progress as we do not have a diagnosis.
On February 14,2010 we brought Anaya home to our place outside Nelson BC to nuture her, love her, and look for Alternative Therapies that may help her condition.
We believe that we can help her to remyelinate her nuerons and live a productive happy life!