I am a 20-year-old girl with Hydrocephalus, an incurable brain injury, among other debilitating conditions. My battle started as a baby when my parents were told that I would never walk, talk, hear or see. Fortunately, I am now a walking, talking, hearing, seeing 20-year-old who has undergone 23 brain surgeries. I endure sometimes debilitating headaches on a daily basis and live with spasticity in my legs that make it very difficult to walk. In 2014, I was diagnosed with Chiari Malformation which required surgery. I spent weeks in the hospital and a rehabilitation center learning to walk all over again. For months, I spent hours relearning to do everyday activities. I do not live a normal life and have missed countless hours of my life because I am either having procedures or scans done, doing physical and occupational therapy or I am in the hospital. I have missed as much as 3 months to a full year of the school year due to shunt revisions and other surgeries. Despite my disabilities, I am a Hampshire Regional High School graduate and I am majoring in biology at Holyoke Community College.
Afterward, I plan to continue my education, earning a doctorate in computational Biology and Bioinformatics at UMASS Amherst. From there, I plan to work in the research facility at Boston Children’s Hospital, to help find a cure for Hydrocephalus. Specifically the pathology lab, which I have interned at. After being a part of the Pediatric Hydrocephalus Foundation for three years I have seen the power of research. I have seen the power of a community fighting for what they believe in. The PHF consists of 34 state chapters all across the country. My mother and I are the chapter directors for the Massachusetts chapter for the Pediatric Hydrocephalus Foundation. Being a chapter director has taught me how to organize fundraisers, as well as how to get a community involved and come together. Last year alone the Massachusetts chapter sent $10,000 to Boston Children’s Hospital for their Hydrocephalus research. Being involved with the PHF has allowed me to find my true calling in life, to become a researcher. Day in and day out, year after year, the PHF raises awareness and funds for research. We talk to Congress and hold conferences, as well as hold walks and fundraisers. We do all this for one reason, to find a cure. It may not be today or tomorrow. It may not even be in 10 years, but because of the PHF and their efforts, I have made it my mission to change the lives of the millions suffering from this disease.
Because of the work that the PHF does year after year, I am making it my mission to find a cure for Hydrocephalus. This may seem like a dream but with the PHF by my side as well as my motivation, I will change the world. I don’t want these dreams for me; I want them for the next generation with Hydrocephalus, who will have the opportunity to be pain and surgery-free.
Join us on Saturday, September 21st for the 5th Annual Hydrocephalus 5K and Family Fun Day
Register you and your family at:
http://phfwalkma2019.eventzilla.net/
The Pediatric Hydrocephalus Foundation, Inc. is hosting the 5th Annual Hydrocephalus Awareness Family Fun Day event for Massachusetts on Saturday, September 21st, 2019. The event is taking place at Mary Ann's Dance and More at 396 Main Street in Easthampton!
In addition to great live music, we will also have plenty of fun activities for everyone! Enjoy face painting, concession stands, fun games for the entire family and our 5K Awareness WALK & Run!
