Danielle, 21

I was diagnosed with hydrocephalus at the age of 7 years old. I remember rushing to several clinic visits and going home when I was not feeling like myself. I was scheduled for my first shunt placement on August 14, 2007 after my first MRI at Boston Medical Center. The images clearly emphasized the excessive amount of water in my brain. Doctors told me I was going to live with a shunt for the rest of my life. I suffered a few seizures throughout my childhood after my first brain surgery. This affected me greatly because I enjoyed being active with sports and dance growing up. I remember losing half of my memory and ability to walk. I felt weak and frightened for my future. However, I grew up hearing the saying “the only way around it, is through it!”

I was home schooled for three months before going back to public school. After returning to school, I was bullied almost every day and did not feel accepted into society. I struggled to get good grades and focus on academics because my health issues took up so much of my attention. I stayed at school for half days until I knew I could handle going back to full school day hours.

Fast forward exactly three years later, August 15, 2010, when I suffered another seizure during my sleep that progressively got worse within minutes. My parents immediately rushed me to the hospital. I was due for a second brain surgery after a shunt failure. Doctors reinserted another shunt as they initially thought the shunt was no longer working. After the second surgery, I was still experiencing seizures. From August 15 to August 20th, I was put in a coma. During this time, surgeons were discussing alternative brain surgery methods for me to survive. Medical professionals and surgeons emphasized that the only other alternative was to drill holes on the side of my brain for the excess water to drain from my brain. On August 20th, 2010, surgeons removed the shunt for good. I then no longer had seizures but unfortunately, this was not the end. I was hospitalized for four weeks under intensive care after my last brain surgery. I was feeling better and healthier but was admitted to the Boston Spaulding Rehabilitation Hospital. Being in the Spaulding Hospital made me realize I needed physical therapy after I couldn’t walk or process thoughts correctly.

August 20th, 2020 is my 10th anniversary of being shunt free! I am now 21 years old and I am stronger and healthier than ever. I always continue to take on new opportunities and I refused to let anyone tell me that I was not able to get back to my normal life. I continue to push through hardships and obstacles with constant tears and smiles.

I am currently a college senior majoring in Business Management with a Marketing concentration. I look forward to working in the sports industry in the marketing field. Last summer, I worked as a marketing intern for the Boston Red Sox. Being diagnosed with hydrocephalus has shaped who I am today. I continue to learn so much about myself as other health restrictions arise from my brain surgery ten years ago. I am extremely honored to be part of this amazing and strong “HydroWarrior” community. I continue to be passionate about connecting with myself and others through my life experiences.

If you wish to read more, I launched my own blog website and would love for you to be a part of my additional journeys! You can access it here: http://thedanielleesantos.com/

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are posted on our website and through social media. Submit your story today!

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For questions, email: natalia@hydroassoc.org with the subject line “Share Your Story”.

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