My Nonprofit Reviews

My daughter was so sick where we live in Canada the doctors were telling us she had inter cranial hypertension for 2 year she was constantly in the hospital always sick in pain and just miserable it broke our hearts they finally sent us to a children’s hospital and she had a doctor just on a hunch all to do a certain test and are we ever thankful for that! She has been diagnosed with muckel-wells CAPS but they are now looking at this as a cross over on NOMIDS/MWS due to her symptoms. I just found this page looking for other people who are going through this as well people to talk to about it and such. She now has a VP shunt that drains the pressure from her brain and is on medication for the CAPS as well we are experiencing learning difficulties and understanding issues now. My husband has now also been diagnosed with this as well all because of our daughter getting diagnosed with it he was miss diagnosed all his life until our daughter got so sick she tells him all the time she saved his life! She is the sweetest girl ever and way I’m just looking for a place that people talk to each other about the struggles of living with this and how you guys cope with everything.

Love the cause and would be any more proud to wear their patch on my vest as we ride through the city’s