BY JENNIFER SIEDMAN

 I attended a conference last week. The keynote presenter, a scientist turned venture capitalist, titled his talk “Rational Hope”. He spoke to an audience largely comprised of industry leaders and scientists about research breakthroughs, citing PKU and Gaucher as historical examples of a treatment coming to market successfully and in a relative quick manner.  I believe his end goal was to illustrate how exponential advances in science have shortened the lab to patient timeline allowing today’s patients to have rational hope for a treatment.

Rational Hope.

I could not digest the term. I still can’t. It has been rolling in and out of my thoughts for days.  I am trying to justify it with my own personal experience as a parent of a child with a rare terminal disease, as a funder of research 20+ years in the making that is now in clinical trials, as an advocate for families still caring for children who have terminal conditions, and as a friend to far too many bereaved parents. Rational hope…..what the fuck is that??!!

If we qualify hope, then his term must imply that some hope is irrational. And this is the nit, the thing that is getting my britches in a bundle.

When Ben was two years old, just diagnosed and barely uttering a word, was my hope that he might learn to communicate and my efforts to teach him sign language, utilize communication boards and utter a word during one of his weekly speech therapy sessions irrational because science had illustrated that I could expect that he would either never speak or in time lose all speech?

And were those physical therapy sessions, horseback riding lessons and the table stander in his last years, all in place with the hope of maintaining his core strength, in vain or irrational because science said we could not expect that strength to last?

Then there is the science.

I know that when I started Ben’s Dream—a foundation to fund research—my hope was to find a treatment that would benefit my child and all the children like him. I also knew, even then, with a perfectly healthy looking two-year-old in my lap, that I could not expect the science to get there in time. Was that hope misplaced and therefore irrational?

As Sanfilippo took more and more of Ben and his functions declined, one could argue that my hope transitioned; moving away from an expectation of saving my son and toward the greater goal of providing a better future for other parents of children with Sanfilippo. Since hearing the term rational hope, I have thought particularly hard about this time in my life; questioning deeply if the hope that drove me to continue to fundraise and support critical research was the same hope that had pushed me to be a better mom to Ben? And if it wasn’t the same hope should I consider this new hope more rational because I could expect the outcome (gene therapy for children with Sanfilippo) to become a reality?  Did expectations met or ones unrealized somehow negate my early hope and qualify it as irrational? And how do I rectify that with hope I feel today even though Ben is gone. Most days, I wake up hopeful expecting something joyous to happen even while I carry a great weight of sadness. Is this hope yet another new hope and is it rational?

Here is what I have concluded.

I simply have hope. Not a qualified hope. Just hope standing all on its own. HOPE. I believe hope is ALWAYS rational. He should have titled his speech “Rational Expectation”.

A few post scripts:

Ben did speak, saying his last word “Boobies” around age 14. I am so glad I have hope and that it pushes me everyday because that is a memory I will never forget. Ever.

I had the luck of meeting the presenter at another event just a few days later. He agreed to meet with me to discuss hope. I will keep you posted.