Patient Strategist? Well, yes I am.

Posted Tuesday February 05, 2013 by Melissa

We go by many names.

Patient advocate -> advocating in health care.

e-Patient -> using the internet to gather health information and cope with your condition.

Parent Advocate -> advocating in education.

We as parents of children with a rare disease … we go by many names. And then there are our other titles – parent, mom, daughter, lawyer, teacher, psychologist, doctor, nurse, banker, broker….

I’ve been a strategic consultant professionally now for about 5 years. In my work life, when all is said and done, I work with law firms to help them better position themselves in the competitive marketplace.

But what I’ve found in these last 3 years since Case’s diagnosis is this: I do the same thing for him.

Whether it’s with the most important aspect of saving his life through a clinical trial, getting a better education through the school system, or accessing needed services, we strategize. Our primary job isn’t necessarily about advocating if you first have to figure out which path is the best to advocate and which competing aspect of their life is the most important to advocate about at any particular time.

The ultimate question of our role: How exactly do we better position our child to have a longer and healthier life?

There is Plan A… Plan B… and Plan C.

And that’s just for saving their life.

I’ve determined that a better name for us is:





I chose this swirly text because it gives you a flavor for what our life is like: many paths, tangents, running in circles, some rough edges, kind of incomplete, but beautiful.

When your child’s health condition is the the center of the entire swirl, and it retains such an ominous prediction of early death, it is appropriate to reference the fact that they are a patient first, and by extension, we as parents, are patients in their stead.

And we are patient. But just barely. We will work the plan and watch it unfold. If daunted, we will go to Plan B. But make no mistake, we will continue the fight.

And we are indeed strategists. From the moment they are diagnosed, we are strategizing about health care, education, services, awareness, fundraising, medical research, therapies…. We are up at midnight, reading PUBMED, translating foreign research reports, calling Japan, no shame, no fear, no pride. That is a strategist. A patient strategist.

Blessed enough for us, Plan A on saving Case’s life has worked so far:

  1. Intense therapies to hold onto enough skills.
  2. Get into the clinical trial.
  3. *Pray for the trial to work.*
  4. And here we are.
  5. Plan A also involves working to maintain his heart and airway (the brain, heart and airway are the biggest causes of death in MPS II boys) and those have their own sub-plans as well.

That might seem a little structured or intense, but don’t you know that most other parents have a strategy too, even if they haven’t written it out like this? And they may all look different because our children are wonderfully and uniquely different.

What is your short and long-term strategy for giving your rare child a blessed life?


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