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Melenie D.

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1 reviews

Review for Hydrocephalus Association, Bethesda, MD, USA

Rating: 5 stars  

Our daughter was diagnosed with Hydrocephalus shortly after her birth at 25 weeks in 2000. I was immediately online searching for any and all information s my husband and I worked to understand the implications this would have on Olivia's life. We were handed the only information that the NICU had available... a brochure from the Hydrocephalus Association. I made the call. As a result of that initial contact, we have volunteered with the Hydrocephalus Association through 3 states and over the course of most of the past 15 years. They have assisted in guiding us to great Neurosurgeons from coast to coast. The improved surgical protocols and information gained from research funded by the HA have helped to keep our daughter alive and preserve her intellect and quality of life. We currently reside in the Charlotte, NC area and are deeply involved with the Walk and the Community Network as we focus on raising funds for continued research for a cure. Over the past 10 months, we have persevered through 22 brain surgeries and an infection that she was not expected to survive. Yet, today she is recovering and will be back in school when it starts back up in 8 weeks, continuing her straight A course of studies, and hoping to hold at her lifetime count of 33 brain surgeries. We are incredibly grateful for the personal support from everyone at the HA; from the Board to our local group, as we moved through such a difficult, frightening and stressful time. Not only do they have a laser focus on finding cures and improved treatments, but in rallying and providing much needed emotional support as families and individuals walk through their individual journeys with Hydrocephalus.
No other nonprofit organization focuses on raising funding for research. Having investigated the other Hydrocephalus groups out there, and how they make use of their finances, we will continue to support the Hydrocephalus Association, confident that they are financially strong and responsible. -Melenie, Tim and Olivia Dailey

Role:  Volunteer