Dylan's Diagnosis

The lives of the Faddis Family changed dramatically August 2019 when Dylan was playing at school and was accidentally injured by another student. The impact he experienced has lead him and his family on a terrifying and mysterious medical journey.

The injury he sustained dislocated his neck at the C2, fractured and chipped his top front teeth and left him with a severe concussion. After this injury Dylan began to act strangely. He went from a gentle, kind, and considerate kid to showing intermittent aggression and defiance.  They knew something was wrong when he went from receiving an award at school for compassion to receiving disciplinary action for aggression.

An MRI revealed Dylan had Periventricular Nodular Heterotopia (PVNH), an extremely rare genetic disorder that many males do no survive past infancy- making Dylan exceptional.

Dylan's injury released inflammation in his brain- triggering this condition and the medical domino's. Six weeks after diagnosis, Dylan began nocturnal seizures, involuntary head and neck movement, memory issues, behavior and emotional changes, that seem to be progressing.

Unfortunately, because this condition is so rare- approximately 500 cases GLOBALLY documented, specialist are almost non-existent.

It was recently confirmed that there are only two other documented males over the age of six with his two  coinciding conditions in the entire world. Making him 1 of 3 miracle males in the world!

The importance of being seen by a specialist is highlighted when you can see that the brain, heart and other major organs can be severely impacted by this disease.

Dylan is even more exceedingly rare because he has also been diagnosed with another rare condition called Ehlers-Danlos Syndrome (EDS), which is a connective tissue disorder that exacerbates his PVNH- making it more fatal.

Dylan's mother Jessica tracked down the Specialist Dr. Chen who leads a specialized team at Boston Children's Hospital ( http://www.childrenshospital.org/centers-and-services/programs/a-_-e/cardiovascular-clinic-for-brain-development-in-genetics-program/). They are eager to meet Dylan as soon as possible to do everything they can to slow progression.
 
The trips to Boston won't just be financially straining on the Faddis Family but also physically straining as Jessica also has EDS and a host of other genetic disorders requiring her to get medical clearance to travel.

True to form Jessica does not feel concerned about the prospect of the side effects that may result. Her concern is doing whatever she can to keep her boy- as long as possible.

As Jessica updates us via Facebook @ http://m.facebook.com/dylans.diagnosis.1?ref=bookmarks  and here on GoFundMe to keep us abreast of his latest medical treatments, diagnosis and shenanigans that a 7 year old gets into- I ask that we come together as a community to support this family in any way we can.

Your prayers are powerful, kind words or generous and financial help a blessing.  If you have any questions you can contact me Victoria Wenz @  [email redacted]  or Jessica via [email redacted] .