Making the Hydrocephalus Association a Part of My Legacy
My name is Haylea Lynn Blank. I am currently 25 years old and have had 21 hydrocephalus-related surgeries. Even though I am a young adult, it is never too early to make your own medical decisions and consider what happens after you are gone. I am always thinking about the future, and looking at the past allows me to be focused on my goals in life. I decided to join the Fudge Solomon Legacy Society to give back to a great organization, the Hydrocephalus Association, who is focused on eliminating the challenges of hydrocephalus. Their focus is on the hydrocephalus community, education and support, advocacy and research, which is very important to me. I want the Hydrocephalus Association to be a part of my legacy because there needs to be a better treatment for this condition and I HOPE one day there is a CURE!
It is unbelievable how many people don’t know what hydrocephalus is and that it can occur at any age, and also that there are several different types. I pray each day there will be a cure within my lifetime as well as better treatment for individuals who have already been diagnosed. It is unfair that so many children have more brain surgeries than birthdays. I believe in supporting the Hydrocephalus Association mission so that future generations have a fighting chance at a brighter future. Educating the general population is very important for everyone to be aware and understand what hydrocephalus is, how it can be diagnosed, as well as treated and maintained. The research that is being done for hydrocephalus is so valuable it is hard to describe. By joining the Fudge Solomon Legacy Society, my legacy will provide continued education for hydrocephalus and other areas that need funding.
A little bit about myself:
I am a twin born prematurely, diagnosed with hydrocephalus at 1 month old. I had a VP shunt with several revisions from 1 month old until I was 13 years old. I was diagnosed with Dandy Walker when I was 13 years old, which was probably present at birth. On December 19, 2002, my current neurosurgeon, Dr. Martin M. Henegar, along with one of his associates, Dr. Michael Heafner, Sr., performed an endoscopic third ventriculostomy (ETV) and externalized my VP shunt. I had my VP shunt removed by Dr. Heafner, Sr. on December 27, 2002. I have been shunt FREE since then. I have had a few other revisions of the ETV, a 4th ventriculostomy and a 4th craniotomy with fenestration because of scar tissue that continues to build up and around the burr holes in my brain. My last surgery to date was an ETV revision that was done August 4, 2008.
Advocating for hydrocephalus and participating in Community Network events and WALKS is a very important part of my life ever since I found the Hydrocephalus Association back in 2002. I want my legacy to show there is more than just my accomplishments and work. I want my legacy to mean something and give hope to future generations that deal with hydrocephalus.
Thank you for allowing me to join The Fudge Solomon Legacy Society. I hope you will consider joining, as well.