Jalili Syndrome Archives -

Category: 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

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

We finally made it. We arrived at 10:30 am for a 10:00 am appointment. It should take about an hour to get to the Cole Eye Institute and I gave myself an hour and a half to avoid being late but the drive took 2 hours.   Between potty breaks, getting pulled over, road construction, …

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