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Well it has been a few days since we have been told and I am past the shock somewhat. Hurler's syndrome is a Cell Storage Disorder. Only 4 to 5 thousand people have it in the world ... arent we lucky I much rather would of like to win the lottery or something. The disorder is where the cell can not process a certian sugar and it ends up building up in organs and bones. We have caught it pretty early and there is a enzyme replacement therapy that is weekly and takes 3 to 4 hours to complete. That will help slow the process of the disease down. The only cure is a bone marrow transplant which we will have to get more details from the doctor about that. We go next Thursday for an u/s of her liver and spleen and a consultant visit. She will get an MRI done also. We have a long road to go and like I said my exceptance is getting much better. We will do whatever it takes to make Dani as healthy as possible. All prayers are welcome.
I don't often come around here, but I happened to see your post and wanted to give you ((hugs)).
My daughter has Netherton's syndrome, the incidence of it is about 1 in 500,000, so I can totally relate to the shock and confusion and even anger in some respects. I, too, have said the same exact thing about winning the lottery. Keep your chin up, and I'll keep you in my prayers.
Your lil one is in our thoughts and prayers .... I know what it is like to be in shock ... With Gavin's cancer we were told only 1 to 20 babies get it a year .... so it makes it so hard to find good info on it ...