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Alexa Romanoskie - Jack's Kids

Jack’s Kids
Alexa Romanoskie

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Alexa’s Story…

Alexa was diagnosed in 2009, at the age of 11, with a massive AVM (Arterio-Venous Malformation) in the Occipital Lobe of her brain.  Most AVM’s involve 2 to 3 tangled arteries and veins, Alexa’s involved 8, and it stemmed off her cerebral artery.  AVM’s measure in size and pressure also.  They range from low to high pressure.  Unfortunately, Alexa’s was high pressure and was 3 1/2 x 3 centimeters in diameter. Her neurosurgeon tried multiple times to embolize her brain with onyx to control the blood flow but was unsuccessful.  On July 6, 2011 she received her life saving craniotomy.  Most of her Occipital lobe was removed leaving her blind in her left eye.  She is still hospitalized a few times per year for uncontrollable migraines due to the surgery.  Her case is being transferred to Harvard.  We are waiting patiently for Stem cell research to see if any vision can be restored to her left eye as well as control her migraines.  AVM’s are birth defects which quite often go undiagnosed and the child does not survive.  Alexa’s neurosurgeon has 2 girls that have survived an AVM as massive as hers.  He refers to them as “My girls”.  For now, her occipital lobe is held together with onyx and platinum coils.  Her skull was replaced using titanium screws.  With these metals she will not set off metal detectors.  Boy, they think of everything!