Today is the World Rare Disease Day blog-hop, 30 days before World Rare Disease Day on February 29th. Dozen of rare disease bloggers across the world are coming together to share our personal stories of how childhood rare disease has affected our lives. (Please check out their stories below)
If you take a look at the statistics about childhood rare disease, the numbers are mind boggling. The ones that hit home for me were these.
- There are only about 50 children in the U.S. (few hundred world wide) with her form of Gaucher’s Disease, that is it! Extremely rare even by rare standards, which is a disease affecting less than 200,000 people.
- 30% of children with a rare disease will die by their 5th birthday. Hannah was 3.
- 75% of the 7000 rare diseases affect children. Hannah.
- Almost 80% of rare diseases are genetic in origin. Neuronopathic Gaucher’s Disease, Hannah.
When Hannah was first diagnosed at 5 months old, there was so very little about nGD out there. It was like finding needles in a haystack just to find any information we could sink our teeth into. But there was something about Hannah that made her family and I just want to fight like crazy for her. We wanted the people who could help her the most, the researchers and specialists, to be reminded of the faces behind this horribly rare disease. In our drive for awareness and answers, Hannah became one of the poster children for life-limiting rare diseases.
As I promised Hannah at her funeral service last month, ”Because of you, other families will be empowered to fight for their children. Because of you, doctors will have more compassion and resources when working with children with rare diseases. Because of you, communities will come together for reasons they never did before. ”
We are going to continue to fulfill this promise to her by actively helping other families with young child diagnosed with life-limiting rare diseases in Hannah’s name with our Little Miss Hannah Foundation at http://www.littlemisshannah.org.
It is amazing what one little girl has accomplished in the fight for rare disease awareness in her short life. To my Hannah: ”One of your biggest gifts, one of the reasons I believe that we were blessed to have you as our daughter, is the awe-inspiring changes you have made in the world. What you have done in three short years, most people, including myself, could never do in a lifetime. You have opened so many peoples eyes, from physicians to friends to strangers, and shown how important it is to fight for children like you, ones for whom today’s medical advances do not have a chance to save.”
The more people who learn about these specific childhood rare diseases, the more they will come to love these children affected by and realize that they desperately need more people fighting for them. There are very few rare diseases with celebrity spokespeople, millions of dollars in foundations, or rare diseases that are a household name where anyone would know what they are.
Before Hannah, thousands never even heard of Gaucher’s disease or have ever met and fallen in love with a child who would lose their life to a rare disease.
But because Hannah was here, because she fought so hard, all those people that loved her will continue to fight against life-limiting childhood rare diseases in her memory.
I love you, my little miss Hannah. The world is forever changed because of you.