Hi

elm1032004 · March 2012

Hi....

I am not on this site often anymore since work is really busy and when I am at home I am never really on my computer, but I wanted to share this article and ask that everyone contact their representatives to encourage support and funding for rare diseases, and to help spread the word about this disease that is very rare indeed.

I am friends with the father in this article. This is a great family. They know that they can't do anything that will save their little girl, they just want to raise awareness and get the word out to try and help other families that get this diagnosis down the road.

https://lacrossetribune.com/news/local/fiona-s-life-parents-doctors-powerless-to-save-baby/article_5093bf32-7248-11e1-9a4f-0019bb2963f4.html

peekaboo716 · March 2012

My heart goes out to the family (and to you).

Dougsgirl4ever · March 2012

I cannot even begin to imagine. So sorry for what this family is going to have to go through.

shopgirl78 · March 2012

Whaaa! I do hope they get their miracle.

elm1032004 · March 2012

Thanks everyone...they are hoping that people will share this article with as many people as possible in order to help raise awareness of this disease, since that is the first step in getting any kind of treatment or research to help these kids.

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https://lacrossetribune.com/news/local/fiona-s-life-parents-doctors-powerless-to-save-baby/article_5093bf32-7248-11e1-9a4f-0019bb2963f4.html

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