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Aug 30, 2010 - 4 comments

Hi Guys just a quick one, firstly I wanna say sorry for not writing back to anyone who has written to me lately and I hope you are all doing well!!! :)
I have been pretty flat out lately as our little boy has been diagnosed with Cystic Fibrosis and have been to the Royal Childrens Hospital in our captital city to get educated on this disease and have been flat out with meds and physio!!!  He was not putting on any weight for about 6 weeks but with his medication now he has put on so much he now has little fat creases in his legs lol.
Anyway I will get on here again when I get another minute hopefully soon and put some pics of him on and check you all out properly :)

Take care and talk soon

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773214 tn?1295135069
by DMarie919, Aug 31, 2010
I am sorry to hear about your little boy! I hope that he is doing well despite his diagnosis and the fact that you are seeking appropriate medical attention.  I will say some prayers for you and for him! :)

184342 tn?1282588750
by tatorbug40, Sep 01, 2010
Oh Marina,

I am so sorry to hear of his diagnosis,  but rest assured that medical advances are amazing and with the proper care he will live a very long and full life,  esp. with you as his mommy.  I am sure it is hard to understand why you are given these complications with your new little joy, esp. given all that you have been through...  but I am sure there is a plan.  Know that many people on here love you very much.  Enjoy being a mommy!  And know that as he grows, medical advances will also increase.  

My father, grandfather, uncle and aunt all have/had a disease called Huntingtons Disease.  It is similar to parkinsons (sp?)....  when my grandfather died nearly 20 years ago, they didn't even know how to diagnos it,  they have since discovered exactly what gene is the mutated gene,  and they are working on finding treatments to prolong life, and increase quality of life for those with Huntingtons.  I myself have a 50% chance of carrying the gene, which would mean that by the age of 40 I'll most likely be showing symptoms (a short 6 years from now)-- holy cow!!  I'm going to be 40 in 6 years!!  how did that happen!?!?!  anyway, I digress...  my children will have a 50% chance of having it, if I have it.  This is on my mind from time to time,  but I know that everyday they are making new discoveries in treatments,  and I am hopeful that if my immediate family (and myself) have to deal with this horrible disease,  that there is hope that I won't die by 52, as my grandfather and father did....  I could very well live to be 70!!!  

That was all to say,  I know it is hard when faced with the unknown,  but try to just keep the hope that as time progresses, so will medicine!  

Hang in there,  and you will be in my prayers and thoughts!!  I look forward to seeing more pictures of your perfect little boy!!


127124 tn?1326735435
by have 2 kids, Sep 01, 2010
Hi Marina-

I have missed chatting with you!  I am sorry to hear about Mitch's diagnosis.  I hopw with treatments he is able to live a very long and joyful life.    I bet you cherish each and everyday holding him in your arms.   Take care and keep us updated when you can.

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by mami1323, Sep 01, 2010
Oh geez, can you catch a break?  I'm so sorry but I'm glad that things are getting better and that you are totally enjoying every minute.  Wishing you the very very very best.  Keep us posted.

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