Saving our Suzie

To our friends, family, colleagues, neighbors, and loved ones—many of you know, and some of you will now learn, that our sweet little Suzie has a rare, terrifying, degenerative brain disease called Late Infantile NCL, a version of Batten disease. A quick search will tell you more than you’d ever care to know about it. It’s as rare as it is debilitating, there are only several hundred cases in the United States. But rarer still is the fact that after speaking to experts from around the world, we believe Suzie is one of probably 5 children in history in which we’ve caught the disease in time to treat, and potentially cure her. We owe that entirely to Suzie’s brother-to-be. When Leah and I underwent genetic testing for her current pregnancy, we did a more exhaustive test that revealed we’re each carriers for this disease, ultimately leading to Suzie’s diagnosis.

To put it in the words of a hematologist from Duke University, who trained at Sloan Kettering “your story is like a work of fiction.” We couldn’t agree more.

In weeks of research, we removed the financial element of any decision to help reach a course of treatment that deals exclusively in prognosis and outcome—not in financial terms. For that treatment, we’ve decided to pursue an extraordinarily complex stem-cell transplant with Dr. Joanne Kurtzberg at Duke University in Durham, North Carolina. She is widely regarded to be the world expert in transplantation of stem cells and we feel unbelievably lucky to have her on team Suzie.

While we anticipate that our insurance will cover the cost of the procedure, we know that the financial burden will be enormous. Between reduced hours that we can work, out of pocket medical expenses, and dual living expenses for the 6 months or more that we’ll be in North Carolina, we’re asking all of you to chip in and help us shoulder some of those costs. 

To those of you with children you love in your life, I hope desperately that you never experience anything like this. That you never read the look on a doctor’s face before they reveal the results of your child’s blood test for a historically fatal disease--and know from that look that no level of medical training has prepared them for what they’re about to tell you. That you never wince with pain when another parent sees your child misbehaving in the supermarket and says knowingly “just wait until she’s a teenager,” forcing you to wonder if she’ll get there. That your daydreams about your child’s future are never clouded by the pressure of knowing that medical decisions you make for her here and now will forever impact what her life will be. These are the thoughts that creep into the moments of the day that should be spent savoring every healthy moment we have with our sweet little Suzie.

We’ve been so touched by the outpouring of support we’ve already received. We love you all dearly and to those of you who have asked how you can help, we’d simply say this: Please chip in if you can, keep us in your thoughts, and hug your own children a little tighter.

With love and gratitude,

Paul, Leah and Suzie