Thursday, June 29, 2017

It Takes Two

It takes two to see Hunter Syndrome in a whole new light.

I wrote this blog because I googled the following: " how common is it for two people in a family to have cancer at the same time".  I didn't like the choices that came back because they were about heredity and genetics but I really want to know if there is data for our situation - "how many people live with more than one person having cancer at the same time in their family?".  To me this is what it feels like to have two children with a rare disease at the same time, in the same family.

It takes two to see Hunter Syndrome in a whole new light.  On MPS Awareness Day, I realized how unique our family situation is with regard to Hunter Syndrome.  We're not the only family who has multiple children with Hunter Syndrome, but there are many, many families who have just one child with Hunter Syndrome.  We also have one child in a clinical trial and one not in the trial.  That narrows down the population of families who have this scenario to a much, much smaller percentage, perhaps even single digits or less.

Having two individuals with Hunter Syndrome has really given us a perspective of the variability of the disease, even in families with the same phenotype, and the individuality of the disease.  In short, we have one heartbreaking perspective and one hopeful perspective, one that requires us to work hard, hope harder, and love harder, and another that eases our concerns, comforts us, scares us that we might lose something so good.  These disparities tug and pull at us but cause us to scream for joy, and at the same time be terrified.  I am not even sure this is something that even the Hunter Syndrome community of parents and effected children and adults can even understand.

I often see others obsess and worry over their child and compare and contrast progress of one child against the population as a whole or those who we know have Hunter Syndrome.  We have this comparison to make in our own family.  We have two.  When you find yourself struggling with one, ask yourself what it would be like to have two or more children with a life limiting disease.

Take the worry, appointments, therapies, education requirements, hope for treatments that save, fundraising, providing for your family and other things the average rare disease parents worry about and multiply that by two.  I don't even think this is a topic that Google handles well or even has enough documented stats.  I recently asked Google how common it is to have two family members battling cancer at the same time with no really good answer except inheritance and the hereditary nature of some diseases. It's logical to have multiple children in families effected by a disease when it's inherited but have you lived it? Living it, and reading it are two very different things.

How is it even possible that we're still standing as parents?  We are still standing because we have two - literally the cause of our strife is literally holding us up, keeping us standing.  We are still standing because of the differences.  We have living proof of possibility, and proof that you can affect everything in small, stabilizing and even disruptive ways.  You can even affect something you don't think you can.  We are having a profound affect on both of our sons' lives. We are still standing because we draw from everything, we learn from other diseases, we know that pulling from the experiences of others helps pull us up or pull us in the right direction.