My name is Olivia, and as a 21 year old with hydrocephalus who has endured over 100 brain surgeries, I’m writing to share my story with you and lead this year’s holiday drive to support the critical research work of the Hydrocephalus Association.
To date the Hydrocephalus Association has invested more than $4.5 million to promote a cure for hydrocephalus. I am so grateful for the work that has been done so far and am hopeful that if we all come together to support hydrocephalus research, we will experience the medical breakthroughs our community deserves.
On December 22, 1995, I was born three months premature, weighing a mere three pounds and afflicted with a grade three brain bleed. I had a hard time breathing on my own and spent my first couple of months in the NICU. My parents were scared but they had no idea how much their lives would truly change.
The brain bleed eventually developed into hydrocephalus. At nine months old, I received a shunt placement and my parents were told that shunt would last about 30 years. They left the hospital thinking I would have a healthy and normal life. Little did they know…
Almost immediately upon returning home from the hospital, I started having major issues. My parents didn’t know at that point that shunts had the highest failure rate of any medical device implanted in children. In my case, I have never had a single shunt last more than a year and a half before either malfunctioning or getting infected and having to be replaced, requiring yet another brain surgery.
During this time, I was continuously fighting for my life. My parents did their best to stay with me, and tried to keep up with my older sisters’ lives. But, they were also battling the financial burden. My mom ended up leaving her job, and my dad had to take time off to take care of my sisters and spend as much time as possible by my side.
After what seemed like eternity to my parents, I slowly started to recover. But, once again, this didn’t last long. Before they knew it, I was right back in intensive care where I would end up spending most of my childhood.
As I grew into my teenage years, I began to experience less frequent complications. That’s when I became more involved in the Hydrocephalus Association’s Teens Take Charge program to raise funds and awareness about hydrocephalus.
I also became very involved in sports as therapy. I first joined a fifth-grade swim team and the high school team in seventh-grade. I later participated in my school’s adapted athletics program through high school, excelling in soccer, hockey and softball, placing in state multiple times. It was not uncommon for me to go straight from the ICU to a soccer game wearing my hospital bracelet! I was awarded “Athlete of the Year” in 2014, which was the same year that I graduated on time from high school with honors.
In October of 2014, my freshman year of college, I was alone in my dorm and suffered from an uncontrolled seizure, another effect of hydrocephalus, that lasted over four hours. This required me to be placed on a ventilator for days in the PICU since I could not breathe on my own. This was the scariest time in my entire life.
I recovered remarkably fast and well and headed back to college a few weeks later, but it was yet another reminder of how quickly life with conditions such as hydrocephalus can change so drastically, so quickly.
But I’m here to tell you that there is hope for us all and you can help.
Just this past October, I had the opportunity to meet leading researchers working in the field of hydrocephalus that are targeting forms of the condition like mine (PHH) that occurs from a brain bleed. Scientist are working right now to find ways to PREVENT PHH progression, PREDICT development of PHH and to STOP and REPAIR brain damage. This is very exciting!
And there’s progress being made not just with my form of the condition, but for those with Normal Pressure Hydrocephalus, SHYMA and all forms of congenital hydrocephalus. Studies are being done to improve shunt survival rates by defining best clinical practices. Pharmacological solutions are being tested to treat communicating hydrocephalus and much more.
Through your continued support of the Hydrocephalus Association’s research efforts, I’m confident we will see significant breakthroughs in the near future.
Despite all I’ve been through, I believe that hydrocephalus has made me stronger and given me a purpose in life: to end this horrible condition. For this clarity, I am grateful. I’m thankful for parents, friends and doctors and for the many people around me who never gave up and supported me during both the highs and lows of managing my condition. And I’m grateful for people like you who support the Hydrocephalus Association’s efforts to alleviate suffering caused by hydrocephalus.
By sending your holiday donation today, you will help develop new forms of treatments beyond brain surgery, and reach better medical outcomes, fewer infections, and ultimately a cure.
Thank you so much for reading my story and helping improve the lives of people like me and every person living with hydrocephalus.