Category Archives: Jalili Syndrome


There was a hiccup with Gavin’s latest genetic screening

There was a problem with the genetic sample that Gavin provided the Cleveland Clinic


Important Update to Gavin’s genetic testing for Jalili Syndrome

I received a call last year out of the blue from a genetic counselor at the Cleveland Clinic because Gavin’s specialist at The Cole Eye Institute had reason to believe that Gavin may in fact have Jalili Syndrome.


Gavin’s #IVIG infusion was different this time

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This was a more painful infusion because it’s more fluid being pumped into his skin but Gavin did really well. 


God grant me patience because I’m gonna need it today

+12 Reddit Share Buffer Tweet Share PinShares 2We finally made it. We arrived at 10:30 am for a 10:00 am appointment. It should take about an hour to get to… Read more »