Prayers Needed: Gavin may have Jalili Syndrome 

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 . 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 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 and the patient he was thinking about, turned out to be

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. 

, , , , , , , , , , , , , , , , , , , , ,

Post navigation

  • Shelley Bond


  • Rachel Lynn Aaroen

    Prayers are on the way!

  • JoshuasMom

    Praying for you all. U0001f64f

  • Avia Batya


  • EllenBeck

    Hopefully that not what it is…. it said it is primarily found in the middle east. I am hoping they are mistaken.

    Prayers sent for and I am also hoping it is ruled out before he gets tons of tests!

  • reonyea

    If it eases your mind any, my eyesight started deteriorating when I was Gavin’s age and some of my adult teeth didn’t form properly and crumbled away until they had to be removed. I’m 29 and I’m fine 🙂 27 teeth remaining and a wisdom tooth on the way, and my eyesight deteriorates about a prescription level a year

  • Honestly that doesn’t make me fell better cause you’re going through it. U0001f612 I get what you’re saying though and I do appreciate. U0001f600