Category Archives: Jalili Syndrome

There was a hiccup with Gavin’s latest genetic screening

I meant to share this last week but just never got around to it. 

I received a call from the Cleveland Clinic’s Cole Eye Institute last week.  This was in regards to genetic testing Gavin had done for an extremely … Read More

Important Update to Gavin’s genetic testing for Jalili Syndrome

It’s been many months since I received any news from the Cleveland Clinic in regards to the genetic testing Gavin had last year. 

Last year, Gavin had a very specific genetic test performed to diagnose something called Jalili Syndrome. … Read More

Gavin’s #IVIG infusion was different this time

      No Comments on Gavin’s #IVIG infusion was different this time

Gavin’s IVIG infusion was different this time around.  As a result of being shorted on supplies, he missed one infusion last Friday. 

Today was the day we played catch up



He received 1.5 times the normal dose, which amounts … Read More

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 … Read More