Island Life
I started this note 4 times now and have had to delete it and try again...and here I go again ;)
It is a good thing there is never so much going on here on our Island. <insert sarcasm here>
I am thrilled that we are not alone anymore. Although my heart goes out to Patricia and Mirek and how hard it really must be to get the news that not only are they dealing with POMC but with 3 members of the family! How to digest such news? I don't know but I send them all my love.
I am only one little person... and with me in the US and them over in Holland it is going to be a challenge getting to know each other and giving the support that we all need but the distance is thankfully made smaller via the internet.
I don't know the 'right words' to say to help any other family I can only talk about what I have done and see and felt. I try to describe my joys and I am always brutally honest about my heartache. I do want to let everyone know that when you come to POMC Island you will NOT BE ALONE!!
I also want to take this time to talk about some other people that are in our lives now too...but I haven't really mentioned them because my focus was on the first genetic disorder POMC. As many know we went up to The National Institute of Health this past summer.
We were involved in a research study done by them and they were excited to see Nate. I am glad we went and highly recommend joining a study to all our friends that have kiddos with rare genetic disorders. My thoughts are that it is all part of 'Finding the Cure' that so many groups/foundations cry out that they are doing... but that we as parents and patients can ACTIVELY have a part of.
POMC
I really enjoyed meeting so many doctors and specialists and I never have any qualms about having students step in and learn about our journey. I find that wherever we go there will be true interest.
I have talked to Doctors and Fellows I have explained things to EMTs, Fire fighters, Police officers as well as to technicians and therapists and yes even to Geneticists and various specialists and I am going to keep speaking out and telling anyone and everyone about POMC Island.
Ok, I am wandering here..sorry, the reason for that jaunt was that when we went to NIH the doctors there gave us more news to digest. "SIM1 2q16.3"... well let me say it was really odd how I took that information and just filed it away and ignored it?! Normally when I find something new to learn about Nate I just jump right into it. Many of my close friends know that I have been known to stay up until 2 am doing research knowing full well that Nate will be getting up at 5.
Well I did finally do research on SIM1(in October) and it fills in the questions of all of Nate's "Bonus Issues" WOW...it is so much to process. Some times I really don't know how I even function without my head exploding!! Yes, this too is a very rare genetic disorder because you know having 'only one' is just not enough for Nate. (*wink) The cool thing is that I had already been in contact with several C6 moms and... surprise... surprise.. there are some here in the US with SIM1!!
SIM1
We are now connected!!! It is the most amazing (surreal) feeling I have had. I hope to be able to add pictures of the boys here on our Island soon. And I welcome then all to come over, 'like' our page and join in with our Island Life.
That is not all....no, I have a little more news to share...I have also been contacted by two other moms that are waiting on test results and they are thinking that the answers to those tests will put them on POMC Island as well....I want to say WELCOME to everyone.
whether or not these new families have POMC or SIM1 or some other rare disorder ALL are welcome!! POMC Island has a growing archipelago of islands and is always supportive of them all.
We may be a small island but we are indeed...Surrounded by 'AN OCEAN OF FRIENDS'
We are POMC Island
It is a good thing there is never so much going on here on our Island. <insert sarcasm here>
I am thrilled that we are not alone anymore. Although my heart goes out to Patricia and Mirek and how hard it really must be to get the news that not only are they dealing with POMC but with 3 members of the family! How to digest such news? I don't know but I send them all my love.
I am only one little person... and with me in the US and them over in Holland it is going to be a challenge getting to know each other and giving the support that we all need but the distance is thankfully made smaller via the internet.
I don't know the 'right words' to say to help any other family I can only talk about what I have done and see and felt. I try to describe my joys and I am always brutally honest about my heartache. I do want to let everyone know that when you come to POMC Island you will NOT BE ALONE!!
I also want to take this time to talk about some other people that are in our lives now too...but I haven't really mentioned them because my focus was on the first genetic disorder POMC. As many know we went up to The National Institute of Health this past summer.
We were involved in a research study done by them and they were excited to see Nate. I am glad we went and highly recommend joining a study to all our friends that have kiddos with rare genetic disorders. My thoughts are that it is all part of 'Finding the Cure' that so many groups/foundations cry out that they are doing... but that we as parents and patients can ACTIVELY have a part of.
POMCI really enjoyed meeting so many doctors and specialists and I never have any qualms about having students step in and learn about our journey. I find that wherever we go there will be true interest.
I have talked to Doctors and Fellows I have explained things to EMTs, Fire fighters, Police officers as well as to technicians and therapists and yes even to Geneticists and various specialists and I am going to keep speaking out and telling anyone and everyone about POMC Island.
Ok, I am wandering here..sorry, the reason for that jaunt was that when we went to NIH the doctors there gave us more news to digest. "SIM1 2q16.3"... well let me say it was really odd how I took that information and just filed it away and ignored it?! Normally when I find something new to learn about Nate I just jump right into it. Many of my close friends know that I have been known to stay up until 2 am doing research knowing full well that Nate will be getting up at 5.
Well I did finally do research on SIM1(in October) and it fills in the questions of all of Nate's "Bonus Issues" WOW...it is so much to process. Some times I really don't know how I even function without my head exploding!! Yes, this too is a very rare genetic disorder because you know having 'only one' is just not enough for Nate. (*wink) The cool thing is that I had already been in contact with several C6 moms and... surprise... surprise.. there are some here in the US with SIM1!!
SIM1We are now connected!!! It is the most amazing (surreal) feeling I have had. I hope to be able to add pictures of the boys here on our Island soon. And I welcome then all to come over, 'like' our page and join in with our Island Life.
That is not all....no, I have a little more news to share...I have also been contacted by two other moms that are waiting on test results and they are thinking that the answers to those tests will put them on POMC Island as well....I want to say WELCOME to everyone.
whether or not these new families have POMC or SIM1 or some other rare disorder ALL are welcome!! POMC Island has a growing archipelago of islands and is always supportive of them all.
We may be a small island but we are indeed...Surrounded by 'AN OCEAN OF FRIENDS'
We are POMC Island
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