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My mother never gave up hope – Edgar’s Story

Hello,

I am Edgar a 14-year-old boy, born with hydrocephalus, and a VP shunt placement at birth. My teenage mother had no experience caring for a baby, especially one born with hydrocephalus. It’s been quite an adventure with many ups and downs and not once did she lose hope. Like she says; “his voice, my heart”. Living with hydrocephalus has been difficult due to the lack of awareness, support, and resources available for children like myself. My mother felt frustrated for the lack of awareness and media coverage for this condition.

I’ve had four head surgeries since birth. My last surgery was in August 2011 when I was 5 years old. Following this surgery, I experienced my first seizure and many more seizures followed. The medication I was prescribed triggered very intense headaches along with mood swings and behavioral changes. All of this led to self-harming and missing school, sometimes missing weeks at a time. Due to my school absences, my related school services stoped. I lived in pain for a very long time.  Nothing helped my mood swings and I experienced feelings of anger that would come out of nowhere.

Hopeless, no sleep, and tired of the pain, my mother decided to speak up. My mother advocating for me caused my doctor to finally change my seizure medication. I have been feeling better ever since. I sometimes get headaches,  but with less intensity and I am finally able to sleep. Also, my mother discovered that sound frequencies help soothe my headaches, and even can prevent them from starting.

I thank my mom for not giving up hope and for the many sleepless nights she spent by my side trying everything possible to make my pain stop. Lastly, I just want to share my experience with those suffering in pain; there is always a way, don’t lose hope, and I believe this too shall pass. #painfree #breakingsilence #2gether4all #hisvoicemyheart #differentglows #beyo

*Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain.

 

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