Camila Raquel, an angel now.

    • Anonymous
      April 15, 2008 at 1:52 pm

      Hi everyone,

      I’m from Bolivia, here we don’t have enough information about GBS disease. I had information that many people can save of this, but unfortunately my daughter didn’t, and 8 months ago she died with GPS. She had 3 years old. I can’t understand yet why she isn’t here with me any more. Her disease progress faster and from one day to other she was completly paralized. We were in intensive therapy cares for almost one week, her heart didn’t resist, and finally she died. She was my only daughter and all in my life. This continues being hard for me. I learn something GPS while I was in the hospital, I really like to help people with that desease here, I want to do something cause I don’t want any people pass for the same as me. I would like to know is some one knows how can i work and help from here. Please help me help children here, if you want write me please do it.


    • April 15, 2008 at 4:52 pm

      I am so sorry to hear the story of your beautiful daughter. My son Kevin is 11 and has cidp for 19 months now. I think your idea to educate in your country is a wonderful idea. Even in our country many doctors do not know about this disease or the proper protocol once it is diagnosed. In fact, my son was mis dx by two doctors before we had the correct diagnosis.

      I think the best place to start would be to e-mail the gbs foundation and request a packet be sent to you. It contains invaluable information that could help doctors in all countries. Additionally, perhaps there is a contact person in or near your country that the foundation could put you in contact with. Maybe you could start at the hospital that you were at and speak to the cheif of staff and forward him the information so that he can make his staff more aware of the symptoms and protocol. If interested, maybe someone from the hospital could attend a symposium on gbs/cidp that is scheduled in the states for Nov 7,8,9.

      I admire your courage and compassion to take the time to help others and save them from the pain that you feel. I will pray tonight that God helps you through this difficult journey and sets you on the path that you desire.
      Dawn Kevies mom

    • Anonymous
      April 15, 2008 at 6:55 pm

      I am so sorry for your pain and loss. No words can help I’m sure but please know you are cared for. Maybe you can tell us what you think is needed. And Dawns advice about contacting the foundation is a great idea. You have plenty of good people here who I am sure are willing to help. Including me.
      All my best,

    • Anonymous
      April 16, 2008 at 12:59 pm

      Thank you guys for your words I really appreciate them. I wrote to GPS foundation, I hope it helps me help here.

      Is really hard to remember all we pass in the hospital here, all I know is that if I can help that anybody feels what I felt that days I will do anything. My angel wants me to help others.

    • Anonymous
      April 17, 2008 at 8:12 am

      I am so sorry for your loss.