Robby, 11

Robby is 11 years old and was diagnosed with hydrocephalus in utero.  At first look, the neurologists thought he had a cancerous tumor and said he would not likely live longer than six months.  However, a more in-depth MRI showed something else.  He had a large blood clot the size of an adult fist at the base of his brain that blocked the spinal fluid from draining.  A shunt was placed when he was one week old and he spent nearly a month in the NICU.  The doctors did not operate on the clot because they were afraid it could cause his brain to hemorrhage.  Further testing showed that his optical nerves were very tiny and underdeveloped.  The doctors said he was blind and would never gain his sight.

At 8 months of age, Robby began defying the odds.  Although it was unclear how much he could see, he was definitely seeing something.  He began tracking objects and people.  At his one year checkup he had a CT scan and the blood clot had completely dissolved.  A teratoma remained (he likely absorbed his twin in the womb and the teratoma is the calcified object that is still in his head), but the clot was nowhere to be found.  Robby has cerebral palsy, but he doesn’t let it slow him down.  He is a happy young man with an outgoing personality and a great sense of humor.  Despite his disabilities he continues to fight hard to walk, speak, and to learn.

Over the past six years, Robby’s shunt has been revised 10 times.  The neurosurgeons do not know why he has so many failures, but one thing is clear.  A little hydrocephalus will not get this boy down!

If you would like to learn more about his inspirational story, you can purchase the book his mother wrote: “Journey of Courage” by Rebekah Wetzler. It is available on Amazon in ebook and paperback forms. 100% of the royalties will go into the fund we created to obtain a service dog for Robby.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

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