Ophthalmology Follow Up

With a relieved heart, we are happy to report back a STABLE vision appointment, no change!

I can’t explain the emotional exhaustion yet gratefulness we have from today. All the anticipation and anxiousness led us to today. Grayson went through hours and hours of testing to give us our results back… stabilization! Thank you all so much for your thoughts and prayers.

We believe the medication IS working! We owe it to our CLN3 parents (now friends!) and doctors for believing in helping our children and doing whatever they can to try to save them! Thanks to them we are working to save every piece of Grayson, including his precious vision.

His aquity is 20/200-20/300, he still has live cells in his eyes, and his OCT scans are the same from April. We pray this stays the same as long as it can!

She has suggested we look into a clinical trial, in New York, that observes CLN3 Batten Disease in children because there may be a gene therapy trial for his vision in the coming years. She mentioned as long as there are live cells gene therapy may help his vision.

He also may see a tad bit better with an eye glass prescription, he will still be legally blind while wearing the glasses but it might help ever so slightly with distance. So you may see Gray sporting some glasses, we’ll let him decide if he wants to wear them or not. He said his friends wear glasses and he wants to feel included.

Thank you all so much for helping us guide Grayson and caring so much for our little boy. The fight to save Grayson is one that takes every ounce of my being (physically and emotionally) but knowing our community, friends and strangers are behind us means everything, thank you.