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Sarah Renehan, 30
MELBOURNE
OR WRITE TO US:

projectbraindrain@hotmail.com

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"Brains Matter."Empowering People With A Life Threatening Neurological Condition.

Introducing The Founder

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Singer/Songwriter and Co-Writer/Colour Artist for The Adventures of Hydro Girl, Sarah Renehan was born with Hydrocephalus (fluid on the brain); she had her first brain surgery at four weeks old. In 2011, after spending a lengthy time hospitalised, and enduring another four brain surgeries, Sarah founded The Brain Drain Project, a website that provides support and raises funds for those living with Hydrocephalus. Through many website interactions, it became clear to Sarah that a lot of people with the condition, young and old, had been victims of bullying. It it the driving force behind The Brain Drain Projects inception. Fighting to create a world in where everyone feels included, accepted and understood whilst providing a safe place for people with the condition to share their experiences and stories. So far since 2011, through numerous fundraisers, we have raised over $40,000. The money has gone towards hydrocephalus research, awareness and towards helping families in need. The Brain Drain Project is in effect.

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The Silvestri Family
Abilene, TX
Salvador's Story
A Parent's Perspective Written By Kevin Silvestri
Photography By Pearl Photography

 After nine months of waiting, Salvador "Salvy" Sante Silvestri came into the world Christmas Eve 2013. The doctor noticed soon that little Salvy was exhibiting seizure activity and became concerned that he was not eating. After 24 hours of being out of the womb, Salvy was sent to Cook Children's Medical Centre in Fort Worth, Texas. My wife (Sabra) and I drove two and a half hours to where Salvy was taken. Our minds were frantic and unsure of the future of our first born. 

        Salvy arrived first at the NICU and was taken to a room, where he was monitored through the night. Sabra and I arrived late in the night on Christmas to be with Salvy. The next morning, doctors of different medical practices crowded the room to discuss the situation. Salvy had suffered an Interventricular Hemorrhage (IVH), Grade 3 on one side of his brain and a Grade 4 on the other. Grade 4 is the most severe type of IVH. In the following days, we learned that significant white matter damage had occured. White matter was explained to us as the highway of the brain, carrying nerve pulses to their respective locations.  Each day brought new information. Salvy slowly gained the strength to breath then eat on his own. After 40 days in the NICU, Salvy was released to finally be home. The doctors wanted routine follow-ups though due to Salvy having excess fluid in his verticals. From the Traumatic Brain Injury Salvy suffered from, Hydrocephalus was apparent.

        At three months old, Salvy had a VP shunt placement surgery. The CSF was not draining. The worst part of Salvy's healing process came from the pain he suffered at the stomach incision. He only felt comfortable sitting slightly upright in his little rocker. But Salvy pushed through. His continued development amazed us. PT and OT therapy became a weekly routine. His first month of visits focused on encouraging Salvy to simply roll over on his own. Doctors were not sure how Salvy would develop. After the success of rolling over, Salvy continued to meet and exceed therapy goals.

      In January 2015, Salvy required another head surgery. A cyst wall had formed, blocking CSF flow to his shunt. Once again, Salvy went through and came out better. To this day, no one knows what caused the initial hemorrhaging. Salvy's neurologist exclaimed that he should be mentally retarded with severe Cerebral Palsy. God had a different testimony for Salvy though. He walks with only a slight awkwardness. He is well spoken, knows his alphabet and does not need special education at this time. 

        Salvy suffers from chronic migraines but always has joy in his heart. He loves music, singing and playing instruments; especially the guitar and drums. While Salvy was dealt many obstacles early in his life, his resiliency never ceases amaze us.  

 

         May every Hydro Family never give up hope. There is a song in each of our hearts and 'where words fail, music speaks'.

Joel Pragnell
Monterey, NSW
Hydrocephalus & Sport
Joel's Story

I have had hydrocephalus since I was born, with more surgeries than birthdays at this point.  I had a rocky start but I generally managed to stay out of hospital for years on end until the end of high school.  After a few more hospital visits and a surgery or two, I thought I was sorted out.  In 2013, I was in and out of hospital regularly in the second half of the year.  Thanks to mum’s persistence and both of our knowledge of the condition, we eventually managed to convince the hospital that this wasn’t normal for me.  It has been a crazy few years since then with some bad luck but overall things have been great.

Despite the surgeries, I have been to two music festivals, multiple concerts and played rugby league.  The league I play for (NSW Physical Disability Rugby League)  is made specifically for physical disabilities and they work around each condition individually.  I am not allowed to be tackled, only tapped.  This has given me the opportunity to a play a sport I love but never thought I could play.  Upon being discharged from hospital in 2013 in one of many visits that year, I was playing an exhibition game at ANZ Stadium in front of a huge crowd.

We are currently fundraising for the opportunity to go over and play in New Zealand.

"This is our first international tour, and our aim is to promote this sport overseas so all disabled individuals have the opportunity and acceptance within a niche group. Over the past few years the players have built a bond of true friendship and bromance that is cherished between them and their family and friends." https://www.gofundme.com/fly-away-footy-fellas?d=166047578

 

The best advice I can give parents of kids with hydrocephalus is, stand by your instincts.  If illness seems related to the condition to you, don’t let others tell you otherwise.  Regardless of what life throws at your child, don’t let it stop them achieving anything

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