She ended up sleeping the entire time I was there...even through her lunchtime feeding. No Candyland for us...boo!
For today's post, I wanted to share a portion of a letter written by Amanda. She sent this to Sandy after meeting Brittany last week:
"After meeting Brittany, I began to think. Cancer is a terrible thing, but there are cures and many people are still able to live great lives. Clearly, further reserach can always be done and new cures will be found, but when is enough, enough? There organizations have billions of dollars and will continue to ask for more. Many people, including myself, continue to give in hopes of helping others, but we don't stop to think about other charities that are in need-much more than many of these organizations.
I want to help spread awareness about Brittany and her disorder and help people realize that maybe their money will do more good in other places. Cancer organizations will continue to need donations, but maybe not as much. I would never discourage someone from donating to a charity which they are connected to but instead encourage them to possible give a little less-and give as well to a cause that needs more. We have been able to find treatments and cures for so many dieseases and disorders and there is no reason we can't find one for Brittany. I believe that reaching out to these organizations that have so much and showing them what life is like for Brittany. Individuals who are sick with cancer (and other more common diseases) may be weak but they can still walk, talk and feed themselves. Brittany, unable to do these things on her own, cannot live the life that even many cancer patients are able to live. It many be difficult to convince someone who has never struggled to give money, but a person who has been sick and been through the struggle is much more likely to feel what Brittany feels. Those who are now happy and healthy, know that it is possible to find cures, but not without much research and donations to fund that research. I am sure that many of these people are able to sympathize with Brittany and realize that it is time we start to look for cures for the lesser known disorders and begin to help those who have bigger needs."
I loved what Amanda had to say. Sandy and I have talked about the millions of dollars that are given to charities by corporations, the government and private sponsers. And although we realize that more people suffer from cancer (and other more common diseases), there are millions that suffer from rare disorders as well. It makes it that much harder to find cures and treatments for theses diseases because there are so many different ones and so few with each one. Funds are limited on research for each specific disorder...so treatments (even diagnosing these rare disorders) and cures are slowed tremendously.
We will fight for NBIA...no matter how small the number who suffer. There is one little girl who has a huge cheering section...and we will be heard.
Please make a donation for NBIA research!
No comments:
Post a Comment