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!


  1. My love is for you and your family. I am sending so much good energy your way Camara, Brent, Solara and of course Anaya.

  2. Camara,
    I send my love to you and your family. This is absolutely heartbreaking, you guys are in my prayers!!

  3. Camara,

    I am so sorry to hear about your situation, my humble prayers are with you and your family. I can't imagine, nor am I going to presume what you are going through. I'm not really sure what to say, I know you must tire of the same replies I just wanted you to know my thought are with you.

    Laurie Buick

  4. never give up! docters diagnosis are never 100% accurate. I believe she will live a long healthy life. Especially with having great parents, and a loving commuinity that is aware. with all my love, and all my unborn baby's love, Anaya is a fighter, and she will continue her fight, and win!


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