The video below will provide more details but if you just want to know what’s going on, here’s the deal.
I received a phone call yesterday from The Cole Eye Institute. This is the premier eye center at The Cleveland Clinic. It was a genetics counselor working with one of Gavin’s precious doctors.
Gavin’s been to The Cole Eye Institute a few times for very detailed exams.
These exams were looking for neurological issues that would hopefully give us a direction to go in. He eye exam was fine but they noted issues with his teeth that we already knew about.
Gavin is lacking enamel on some of his teeth and has had to have metal caps installed as a result.
They took detailed pictures of his teeth as well.
This doctor was at a conference and a case was presented that was very familiar to him. The disorder is called Jalili syndrome and the patient he was thinking about, turned out to be Gavin.
Jalili syndrome is extremely rare and there’s almost no information online but it involves defective teeth and issues with the eyes. One of the key symptoms is progressive vision loss and as you may know, Gavin’s recently dealt with that and now needs glasses.
It’s not uncommon for teens to suddenly need glasses, so no one thought anything of it.
Well, now it’s concerning once again.
They basically told me to give them a day and time and they will get him in for genetic screening and further exams to look for things we didn’t know to look for previously.
Prayers are needed for Mr. Gavin once again. They will be much appreciated. We return to The Cole Eye Institute this coming Tuesday and just a bit nervous.