What color do you see? Blue? Denim? Navy? If the name wasn’t on it, would you have any idea what this is?
This week, this dress was EVERYWHERE online. I am one of the many who debated its color. I even had my husband in on the discussion. (He sees blue and black, I see white and gold by the way).
It was everywhere. People in homes, business, schools, and churches were talking about it. It made the major news programs. The sports talk shows were even discussing this dress in lieu of scores and highlights.
Why am I bringing it up yet again? Because that dress got more attention in 24 hours than Lissencephaly will likely ever get in my life time.
Rare diseases like Lissencephaly do not get a lot of attention. As parents, we are often stuck searching for information online, or from families who have gone on a similar journey. Many doctors understand the basics, and if you explain the main issues they can quickly infer what they need to in order to help you with emergency treatment. But unless you are fortunate enough to find a specialist who has a true familiarity with it, they don’t know a lot more than those basics. They are stuck quoting the two-year life expectancy, because they’ve never seen it beaten. Week after week our facebook group sees new parents introduce themselves, scared to death because all they can find are frightening statistics, and discouraging reinforcement.
This isn’t a Lissencephaly problem. This is a “rare” problem that isn’t rare at all.
Rare diseases are EVERYWHERE too.
Here are some facts that are likely NOT to go viral, because they are a bit too hard to stomach:
- Approximately 50% of the people affected by rare diseases are children
- 30% of children with rare disease will not live to see their 5th birthday
- Rare diseases are responsible for 35% of deaths in the first year of life
- Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease
The harsh reality is the funding isn’t there, and I sort of understand why. I understand economics. I understand rates of return. I understand getting more bang for your buck by focusing on larger more common issues. Numbers are my thing. I GET IT.
But once you’ve been introduced to this world. Once you’ve seen the faces of these precious children, some of whom have a genetic mutation that is so rare it doesn’t even get a name, much less a ribbon. Once you’ve seen the heart breaking pleas of some of the hardest working, most caring parents I’ve ever encountered…YOU CAN’T POSSIBLY GET IT.
You can only wonder why there aren’t more options. Why there aren’t more effective medications. Why there isn’t more support. Why you have to fight insurance companies and programs and spend more time being an advocate than a parent. You wonder why a white and gold dress garners more attention than these two precious faces and the millions who are fighting similar battles:
The majority of you reading this likely can’t research cures, treatments, medicines, or therapies. Maybe you think you can have no impact at all. But you can.
You can love them despite and because of their battles.
You can help the families see that rare or not, these individuals and those who love them matter to you.
You can care about rare.