A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Monday, February 10, 2014

Rare Disease Month - Day 9

It's February.  That means it is time to focus on Rare Diseases.  You can read more about what I wrote about the past 2 years by clicking on the links to the right.

This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.

Today is about Mael in Switzerland. According to his mom, when he was diagnosed 4 years ago, he was the only child with NPC in Switzerland. There were several adults with NPC, but no children. Since then, there have been more kids diagnosed with NPC in Switzerland.

Mom Claudia told me that connecting with the worldwide community via social media and email has helped alot and made her feel not as lonely.

Mael also has a website: http://www.maelslife.com/index.php/en/ and a foundation: http://www.maelslife.com/index.php/en/donate-help/mael-s-life-foundation


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