It's been a couple of years since I posted on this blog and for those of you that followed me, I apologize for that. I have a few excuses: 1. My son went away to college and didn't need me anymore so what else did I have to say? 2. I'm still really taken back by the fact that he was removed from the clinical trial because he developed a secondary vision issue which we fixed thank goodness but they still wouldn't let him back in the trial. 3. I learned that the clinical trial did not go as we hoped so many of my dreams for a cure for my son's disease have been completely crushed.
Rest assured, these excuses are only excuses for the blog pause. I have still spent much of my time raising awareness for the need for cures for all retinal degenerative diseases. We still have our Black Ties & Blindfolds event every year. In fact, this year, it will be April 18 at the Museum of Science & History in Jacksonville, Florida. If you want to come, please check out the Black Ties & Blindfolds tab soon for instructions.
I must admit though, my heart has not been it like it used to be. It's probably wrong, but this journey of a cure has always been a journey that I was taking with my son. Now that he's moved on, it's hard to take it on by myself. I know he needs to move on. So he should and I am glad for him. He is thriving. He's still studying aerospace engineering and has a lovely girlfriend who is majoring in biomedical engineering. Seeing the two of them together is like watching the two smartest people I know make each other happy. That makes me happy.
She doesn't even seem to care about his vision impairment which makes me even happier. My dream for him has always been that people will see him for who he is; his brain, his kindness, his ability to empathize with others. I think he's found his match!
So, updates from the last blog.... There are still many clinical trials that are showing good results! Please go visit the Foundation Fighting Blindness to see more. The trials that seem to go well are the sub-retinal treatments. The intra-vitreous treatments are the ones that are not working so well. As always, that is my non medical, mom version of the studies. I am glad that these studies keep moving forward. I would really be happy to see an intra-vitreous treatment work. I hope people are still working on that.
As I said many years ago in a blog, they cured my son's disease in mice over 15 years ago. It's time to cure it in humans!
Also, we are all in this together. Cures are great but getting our kids through every day is more important. I am super proud of my son for always being his own advocate and always emerging from every day ahead of the game. He is amazing! I am very thankful. I would like to help other parents do the same with their kids.
4/1/2022 06:10:48 am
Thank you so much for your heartfelt writings. My XLRS+ son is almost 4 years old and your words ring so true, so familiar to me, it's like they could be straight out of my journal. I want you to know what an inspiration you and your son are for someone like me and my son. You've "been there and done that" and your journey gives me a realistic glimpse of what is to come as well as some sage advice on how to be the best advocate for him. Thank you from the bottom of my heart. Love,
Lisa L Pleasants
4/2/2022 02:40:13 pm
Thank you! Wishing you and your son the best and feel free to contact me if you ever have any questions or just want to talk ?
9/8/2022 05:24:35 pm
Thank you for sharing your thoughts about your son. My son is 28 and lost vision in both eyes at 19 due to a retina detachment in both eyes. It has been a very long and emotionally challenging journey for both of us. My son has not yet found his special young lady. Reading your post gave me hope that one day my son will also find love. I also really understood why you miss your son so much. Hope you are doing well. Take care. Millie
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