My daughter Kate desperately hoped for a cure for hydrocephalus and had the fighting spirit that this horrible condition demands. In fact, she is the reason I am writing today to ask for your support of the Hydrocephalus Association, the largest private funder of hydrocephalus research.
Kate’s journey with hydrocephalus, while both beautiful and tragic, has led our family to continue to try every day since her passing, to increase and improve hydrocephalus research so that others may have the Gift of Life. If you or someone you love has hydrocephalus, I think you’ll agree: We need more research. We need new solutions. And we need a cure. After reading our story and thinking of the people you know whose lives are touched by hydrocephalus, I hope you’ll send a generous year-end gift to the Hydrocephalus Association to support more research, better solutions and a cure.
Our journey began when Kate was born prematurely and with hydrocephalus. At barely two pounds, she was very tiny and very sick. We were told that even if Kate survived, she would never walk or talk or develop normally. But when I looked into my daughter’s eyes—through the frightening tangle of tubes and wires—I saw a spark, an unmistakable light—saying, “I’m still in here! Don’t stop trying!” And so we kept our hope alive.
Amazingly, for the next 10 years Kate needed only one shunt revision and grew into an adorable girl who loved life. That’s not to say there weren’t challenges—we worked with Kate every day to overcome learning and language delays. Since one side of her body didn’t work as well as the other, we started her swimming as therapy. She became a masterful swimmer and today most of her swim records still stand!
But when Kate turned 11, everything changed—her shunt, a dream come true lifeline for a decade, became the nightmare of her existence, for the next 15 years.
Kate’s shunts failed so frequently attending regular school was impossible. She had to stop swimming, never made it to a prom, and missed family reunions and vacations. Despite dozens of surgeries, and the added isolation of independent study, through sheer determination, Kate graduated on time. She was admitted to college as an honor student—where she hoped to fulfill her dream of becoming a nurse.
As Kate grew older, the challenges of managing the condition became more difficult. We sought new techniques, including a novel jury rigged system to manually pump the shunt to ensure the fluid was draining properly. One of her doctors felt the system not worth the effort it demanded and suggested we simply give up and say our final goodbyes.
It was Kate herself who first found words. Though she had been lying in bed silently with her eyes closed, Kate opened her eyes, and said, in a quiet, but firm and pleading voice, “No! Don’t … not … try!” Tears began to roll down her cheeks:
“Please. Don’t not try!”
Despite having endured so much, despite facing a long road ahead, Kate was not ready to give up. Kate wanted to live! Kate wanted to try! We continued to pump her shunt and eventually the system drained on its own. Her headaches disappeared. The problem that brought her to the hospital had been solved.
During this time, Kate worked hard to relearn to sit up unaided, then to walk again. She served others by making care packages for therapy, and allowed doctors to study her unusual case. And although she was likely unaware of this, Kate continued to teach family, friends and medical staff about strength, courage, hope, and love. Most importantly, Kate remained grateful for every day she was alive (as did we).
Sadly, after 10 months, hydrocephalus eventually stole her life.
I know this is the type of story that is challenging to hear around the holidays. But we hope her story might inspire others to join us in our fight for increased research. I write to urge you: Please “Don’t not try” to end this difficult condition! For Kate and all loved ones, young and old, currently affected by hydrocephalus, please make a year-end gift to support ongoing research. We need new solutions. We need a cure. We have to TRY!
It is truly up to us—the people directly affected by hydrocephalus and the others who care about those suffering from the condition—to do what’s necessary to advance the field of hydrocephalus research. Thanks to support from you and others in the past, the Hydrocephalus Association has already made great strides—from exploring alternative treatments such as a nasal mist to help the body absorb cerebral spinal fluid, to establishing a treatment protocol to reduce shunt failure rates, there is hope.
The gift of life is so precious. Please let’s join together and create even better lives for our loved ones who face this challenging lifelong and life-threatening condition. Kate was right: Until a cure is found for this difficult and life-threatening condition, We Can’t Not Try!
Thank you for all of your ongoing support.
Board Member, Hydrocephalus Association
Chair, Team HYDRO
P.S. As a mom and a hydrocephalus patient advocate, I know that finding a cure will take our commitment, determination, and perseverance—the very things we demand of hydrocephalus patients every single day. Please make a year-end gift to the Hydrocephalus Association today.