“In separateness lies the world’s greatest misery; in compassion lies the world’s true strength..” Gautama Buddha

It was 13 years ago and I still vividly recall helping my daughter navigate through the dark, cavernous parking garage. Locating our black Subaru I hoisted her up into the back passenger seat. Buckling her in the car I beamed as I told her “I think we’re about to finally get some answers”.  Sasha was almost 9 years old and yet her diagnosis was still unknown.

Les Colombes Origami Doves Installation, Michael Pendry

As we headed home from Dartmouth Hitchcock Medical Center that afternoon after meeting with a new specialist, the very long list of rare diseases swirled through my mind. I was so optimistic we’d find out that this one, whichever one that she had, would be something treatable. I felt simply elated the entire drive home.  I remember convincing myself that some deficiency requiring vitamin injections was the likely culprit. I kept smiling back at Sasha in the rear view mirror. Our lives were about to dramatically change. It never entered the recesses of my mind that she might instead have something devastating.

I don’t know why, but for some reason this specific memory is the one that kept surfacing last year as I contemplated my elevator pitch for Rare Disease Week on Capitol Hill. In November, I’d responded to an email from the National MPS Society volunteering to advocate before my state’s Congressmen in February. It was an exciting opportunity given my love of politics (being my first college major) and rare disease advocacy. It was equally exciting as a Mom.

I have so many reflections from the special series of days spent in Washington, DC. So much was learned, with the most educational experience stemming from the two other MPS Moms I’d met from New Hampshire. However these Moms children did not have MPS III, but instead have MPS I. It was so unique being able to hear their perspective about a disease similar to Sasha’s and yet also very different. I listened intently while they shared personal insights of the hurdles that still remain for this MPS Syndrome. They shared with our state’s health advisory staff alongside sharing with me.

MPS I, Hurler-Scheie Syndrome, if diagnosed very early, does have treatments. This is not a simple intervention however, and before the process can even begin a bone marrow transplant must occur. I marveled at what these families must contemplate and endure when their child is deemed a candidate. As with any condition requiring bone marrow transplant, the immune system must first be suppressed for acceptance of foreign matter to take place. The sacrifices and fears a family confront when approaching such treatments are not easy ones.

When I spent those remarkable days with these two MPS I Moms, they shared with me these stories, and the steps required for their children to eventually receive enzyme replacement therapy. They shared some of those same stories during our meetings on Capitol Hill. And for some reason, specifically the stories of clinical isolation, resonated with me. A lengthy isolation period must take place to protect a bone marrow recipient from viral and bacterial pathogens. These isolation periods can last months to well over a year. They often take place in a hospital room where there is no familiarity in terms of routines, people, food or environment. Couple that with a most worrisome time facing tremendous medical risks and consequences.

Little did I know when I was so moved by their stories that the pandemic of COVID-19 was soon set to explode. Today, our nation and our world has a similar, universal sense of concern. For many there seems to be a teeter-tottering of emotions, vacillating between “this is absolutely ridiculous” to “this is absolutely terrifying”.

These are trying times.

When I reflect with fear at the thought of Sasha potentially contracting COVID-19 I then think of those who already have a positive test result. I think of those two Moms who went such great lengths for their children. I am reminded that what is being asked of us is not insurmountable. And maybe now I know why that parking garage story kept replaying, over and over again in my mind. Because I again find myself thinking, with such high hopes, that maybe we will find an answer to this thing.