Unless you or a member of your family have a rare disease, I don't imagine you know what's it's like. I don't. Our kids have some conditions, none of them diseases, and none of them rare. Autism diagnoses are at an all time high and the waiting times for many are too long. We have support through various condition related groups and charities. I help at a local charity for disabled children and their families and we had a parent come in with a toddler who had a very rare condition.
By pure luck, a colleague had met another parent with a child a few months older with the same condition and with permission she was able to put the parents in touch with each other. This was and still is the only 'other' one each of them know of and you won't be surprised that despite not living near to each other, the families have become close. I think sharing about World Rare Disease Day is a wonderful thing and so this wonderful Wednesday post is a collection of some WRDD2017 posts.
- Read about Hunter's Life and learning to live with MPS II here
- Raisie Bay writes about being one a million, or one in two million even here
- The World of Gorgeous Grace asks what being 'really disabled' is and writes about her experiences on her blog...
- And then did a fantastic piece on the Scope Blog 'Dear Mum and Dad of a newly undiagnosed child'
- The fabulous Inclusive Home blog says although they are 'rare they are not alone'
- And finally Miriam Gwynne is searching for others with the same rare disease as her son