Off to see Dr. Drack!
February 16, 2023:
After a long day yesterday of traveling to Iowa from Texas, today we met with Isla’s amazing ophthalmologist Dr. Drack to evaluate and measure Isla’s current vision/ ocular health. Isla has been on a very exciting new medication for the past several months that will potentially halt (or at least significantly slow down) disease progression. This could very well include halting vision loss too. Isla is her doctor’s FIRST CLN3 patient with functional vision to begin this medication so her test results will help determine the efficacy of this medication. A lot was riding on today.
After running the marathon of tests we had the results. Since her last visit here in October Isla has had NO retinal thinning, NO loss of photo receptors, NO deterioration. Her visual acuity is identical (she actually scored higher in her left eye than 3 months ago!)
We are only 3 months in, so today is certainly not a final answer on the efficacy of this medication. But it is absolutely a very encouraging step in the right direction. We couldn’t have asked for better news. Thank you all for your endless prayers, and please keep them coming! We have been saying since day one that we believe Isla’s future will be different and she is proving that to be true at every turn.
And thank you to our community for supporting Isla with your generosity that has allowed us to continue Isla on this unbelievably expensive medication. We couldn’t achieve these miracles without your support!
Also, Iowa City got over 8 inches of snow today alone. We had a ball! Enjoy Isla’s snow pictures!
