April is PIDD awareness month. We've discussed this already. I feel like this week is "be aware that you might die of this stuff" week. Or, conversely, "look how lucky you are to be alive with this" week.
2 children I did not know, but were close to others in the community, passed away recently. These kinds of news stories shared by those I know hit close to home for me and remind me how tenuous things can be for those with rare diseases.
Brooke had ataxia telangiectasia and died at age 16, much beloved by everyone who knew her. You can read more about her life here.
Giovanni was born with NEMO. His life inspired people around the world to become bone marrow donors, even though he never found a donor match himself. You can read more about him here.
These are just two of many stories. Some are more hopeful than others, but stories like these are the ones that make me the most sad, but at the same time grateful. Grateful that we had a loving family doc that kept me healthy all those years so I didn't know I had a PIDD. Grateful that I am now able to access world-class care that keeps me well and ensures a good quality of life. Grateful that I am one of the lucky ones. My heart goes out to these families and the many others who never know the name of their child's disorder.
No comments:
Post a Comment