When a child has a rare disease, it’s tough on them and their whole families. It’s hard to find doctors to diagnose and treat them, there often aren’t medicines, protocols or special equipment to make their lives easier or cure them, and kids can feel “weird” when they just want to fit in.
To help these kids, and their families, there’s a great group called the Children’s Rare Disease Network. http://www.crdnetwork.org The beauty is, when kids with rare diseases come together, they and the public see that they aren’t so rare! Feb. 28 is World Rare Disease Day, and many groups are coming together, helping to raise awareness.
Chris and Hugh Hempel introduced me to the CRDN through their beautiful 6-year old twins Addi and Cassi. Check out www.addiandcassi.com for their story.
Please hug your kids and spouse / partner today, just because you can!