When selecting a Stroke Hero, we strive to find survivors who encourage, empower and challenge us to dare to be … more. 

Rachel Johnson is a 19 year old Childhood Stroke SURVIVOR who embodies all these qualities.

Rachel’s birth in and of itself was a miracle.  When she was born, March 24, 1990, she was delivered 3 ½ months premature, weighing only 1 pound 14 ounces.  At the time Rachel was born, “preemies” rarely survived such an early birth.  She was delivered at a hospital 45 minutes from her parent’s home as it was the only one equipped and capable of coping with such a premature birth in the area.  

Rachel feels that had it not been for the advanced care she received at birth, she would not have survived.  Yet despite efforts made to stabilize her condition, her preemie status increased her risk for Intraventricular Hemorrhage or IVH.  IVH is a bleeding of the brain's ventricular system, where the cerebrospinal fluid is produced; it can result from physical trauma or due to hemorrhaging from a stroke. 

Rachel suffered a Grade IV, which is considered the worst type.  The stroke left Rachel with Right Hemiparesis (Muscle weakness on the right side of the body), Epilepsy and Hydrocephalus (a condition resulting in an abnormal accumulation of cerebrospinal fluid in the ventricles, or cavities, of the brain).  Rachel’s Hydrocephalus is being treated with a VP Shunt, which is a type of tube used to drain excess cerebrospinal fluid from the brain and carry it to other parts of the body.  She states that she’s fairly confident she has Arthritis; however this has never been confirmed.

Growing up one handed wasn’t the easiest thing in the world; actually it was far from it.  Rachel suffers from pain much of the time as her body wears out so easily because it doesn’t function symmetrically.  Rachel credits the support she received from her friends and family that allowed her to learn to manage with her multitude of challenges.  Faced with the odds, Rachel considers her life a total blessing!

Rachel says her medical history later in life was fairly “unremarkable” until December 2007 when the proximal end of her shunt broke requiring replacement.  Because of the timing, she didn’t miss much school but still found herself confined to bed during most of her Christmas vacation due to it being her first revision.  However, the new shunt brought new challenges; because it could not adjust to air pressure Rachel began suffering from debilitating barometric pressure migraines that often forced her to bed for 6 or more hours per day.  Rachel likes to joke that she could have a career as a TV weatherperson due to her uncanny accuracy in predicting the rain!

June 2008 Rachel endured her second revision.  Originally misdiagnosed as a pulled muscle, she suffered a month before finally going to Montefiore Medical Center in the “Bronx” where they replaced the entire shunt (from head to stomach).  The procedure required Rachel to miss school for the remainder of the year; however she was determined to walk across the stage at her graduation two weeks later – and she did!

Rachel is determined to do anything she sets her mind to, regardless of her physical challenges.  At 19, she is a freshman in college with a full scholarship.  She entered college with 21 academic credits due to her participation in the Advanced Placement Program (which actually makes her a sophomore).  She loves to read and write.  Rachel’s work was published for the first time in the spring of 2008, which she describes as an unbelievable achievement. 

She hopes that her story will encourage other childhood stroke survivors.

Because of Rachel’s tireless optimism and love for life, she has been selected as our April 2008 Hero of the Month!

Read more as Rachel tells her own story as it appeared in the Times Herald-Record in April 2008

Rachel's Article

Read the story by the reporter who originally wrote about Rachel as she reconnects 17 years later

Rachel Revisited

 

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