Last few weeks on Facebook I met parents who has kids with Atypical HUS. It is been great to contact other parents who has kids with Atypical HUS kids. Some parents have little kids, some are older, some are lost their kidney function, some had small % left. This disease is so different and there no one alike. There is new medication available it called Soliris, it is been tried on three people. I got to talk to one mom on the phone and that was awesome to hear who understands what this disease does to our kids and be able to find more information for my self.
Anna is doing great still on her plasmapheresis, i really hopping that our doctor will let Anna skip her treatment on her Birthday. Did i told u her birthday is coming up this month and she will be 11yr. old. Someone came up with idea to send Anna pictures wishing her Birthday and we will put them on Anna's door, so she knows how many people praying for her healing. So if you would like to send it one please e-mail me at lululchik@gmail.com
1 comment:
I saw Anna's birthday count down on your side bar!!!
I'll make sure I send her an e-mail.
That's great that you met some people that are going through the same things as Anna. To be honest I have never heard of Atypical HUS before I found your blog.
Hugs to you all!
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