Palm Trees & Dragonfly Dreams

     Island life   I really don’t know how much I truly have to offer someone, how much comfort can a struggling, broken, single mother really give?!?!? But I keep sharing our journey and I keep writing because I must. But you see we live on an island. It is called a rare genetic disorder, it is called a genetic mutation, it is called an orphan disease because there are less than 50 in the whole world. It is dangerous. It is my life.  I call it POMC Island.  I landed here in 2010 May 6 … flat on my face. At first I was numb I did not feel anything I did not think about what this all really meant. I did not research anything I did very little reading. But then the storms came… Oh how the storms ravaged, and for oh so long I could only cry and mourn. Then ever so slowly and cautiously I reached out… I went thru the stages of loss and grief of denial and acceptance. It was not easy. And I still have all of these feelings and...

Dear Karen,   My apologies for not responding sooner. I am working in Leiden University Medical Centre as clinical biochemist. I have been involved about 10 years before in one case of complete POMC deficiency. I will forward your great initiative to some of our pediatricians, who have been involved in the past with that patient. I am not sure whether these parents want to be in contact. They were not from Dutch origin and did not speak Dutch very well. They no longer visit our hospital anymore. I  think they now irregularly see a pedeatrician in Rotterdam or The Hague. Maybe our pediatrician can help you passing on this information to the parents through her colleague in Rotterdam.   I think Patricia's daughters are not being treated in Leiden University Medical Centre, because otherwise I would have noticed their laboratory results.   Best regards and good luck with your crusade to spread as much information on this subject amo...

Just the other day I was talking to a good friend of mine and I said something that reminded me that I was going to blog about what has been going on here on our 'Island' or in this case, NOT happening.... Then end of August saw Nate pretty sick, in fact last year he was sick almost all the time. It was horrible for both of us. I am very please to say that for the last 4 months Nate has NOT been sick! wow!! It is wonderful, but how is this??? Nate no longer goes to the daycare center (this is with mixed emotions for sure!!!) He is home with Mommay 24/7 When Nate went in for his T&A and tubes in his ears he was still fighting off his chronic ear infection and after the operation he spent 2 rough nights in the PICU. He went into crisis right after the operation as I feared he would. Then when we got home he fought for his health for another 2 weeks. It was the longest stretch of being sick to date..over 26 days straight of sick Goober-Fish and stress d...