Spidey Sense

Ethan - Halloween 2007

Spiderman with a Sword

In February, as we were driving to the Utah Jazz game where Ethan was going to be one of 30 rare kids on the court with the team for the National Anthem,  Ethan and I were talking about Rare Disease Day and the events coming up. As I was talking I felt the need to change topic directions and talk to Ethan more in depth. He is wise for his 11 years and great to have discussions with.

I asked him if he remembered the line from Spiderman "where there is great power there is great responsibilty" and of course my super hero son did. I told him that he was like Spiderman and had a great power. Yes Ethan has a disease and yes it will be for life and it's frightening every single day, but he has things other kids fighting diseases don't have. He has his sight, he is verbal, he can walk on his own and leads a very "normal" life. This is his super power- the ability to carry on while fighting Atypical HUS. We talked about some kids we know that have challenges in these areas and what he can do about them. This is where the great responsibility comes in. I explained to Ethan that I, and hopefully he will one day, do what I do for rare diseases because we can.

We have the opportunity to be the voice of those who cannot speak. We have the opportunity to climb the steps of every capital and every building we can to share our message. A message of hope, of the need to look outside the box and the need for help within the rare community. We have the chance to physically see what work needs to be done and we have the physical strength to do it. Yes we have a treatment for Ethan's disease. No that doesn't make it any easier. What are the side effects, how will it change, what are options down the road? A treatment gives us time to work harder for our disease and for others. With the great powers that our bodies can physically use, our responsiblity is to Atypical HUS and the rare disease community to raise awareness, make a change and give someone else the chance to have great powers in their own lives.