As we are about to embark upon our 6 month appointment in a few weeks, I can't help but think about how fast the time has passed. We went from waiting on pins and needles, to a tornado of activity, and now we are all settled in. Its amazing how quickly 6 months has come and gone. Life has changed for the better. And with the passing months, its become "normal". The time of watching Nomi with baited breath has ended.
It's been quite some time since I have last posted. There have been a number of reasons why, and I won't bore you with all of them.
Primarily - we have been extremely busy with life... as all of you are as well.
Secondly - I have been asked to limit and filter the amount of information I share.
This is due to the fact, that this therapy is still awaiting approval by the FDA and if someone who is making the decision happened upon my blog haphazardly, it could affect his/her judgement. This trial is supposed to be blinded/randomized.
This treatment can help a lot of people out there, and I wouldn't want to cause any issues that can delay it from reaching the marketplace. People deserve the same gift that my son has received.
I also hope researchers can further push the boundaries of this treatment. Perhaps find ways to treat the entire eye (not just the center 1/5), find a less invasive means, increase the dose, and/or start the treatment sooner. So much can still change and improve, based on what happens next with the FDA.
Gene therapy is the next frontier - and like Kirk and his crew, Dr. Maguire and Dr. Bennett have paved the way.
Out of respect for the wonderful researchers and team at CHOP, I have to comply. i will try my best to limit some information that may hurt the trial. If any of you have specific questions, you can message me privately, and I will be happy to answer what I can.
With all that being said, on to Nomi.
Nomi has been doing extremely well. He has adapted and learned to use his new found vision very well. This is probably also thanks to his ongoing maturity.He also has a much more clear understanding of what limitations he has. Blending the two together, he has continued to become more independent.
As an example, his visual acuity has changed. It was Nomi who pointed it out. He noticed that his glasses "didn't work" as well as they use to. His acuity has also improved. He still needs a very strong pair of glasses, but they aren't nearly as thick as his last pair.
At his last IEP meeting at the beginning of April (that's Individual Education Plan - for school) his teacher, Mrs.Caskey, discussed just how far Nomi has come. His school work has gotten better, and he has become much more social. He is less hesitant and afraid to try new things. She is extremely proud of the progress he has made. To her, simply put, the procedure has made him a new child. Mrs. Caskey has done a wonderful job helping Nomi. She is a great teacher. And I am absolutely sure, part of his success is due to her hard
work.
That's it for now folks. Thanks for reading. Again, we appreciate all the love, prayers, and support.
God Bless.
It's been quite some time since I have last posted. There have been a number of reasons why, and I won't bore you with all of them.
Primarily - we have been extremely busy with life... as all of you are as well.
Secondly - I have been asked to limit and filter the amount of information I share.
This is due to the fact, that this therapy is still awaiting approval by the FDA and if someone who is making the decision happened upon my blog haphazardly, it could affect his/her judgement. This trial is supposed to be blinded/randomized.
This treatment can help a lot of people out there, and I wouldn't want to cause any issues that can delay it from reaching the marketplace. People deserve the same gift that my son has received.
I also hope researchers can further push the boundaries of this treatment. Perhaps find ways to treat the entire eye (not just the center 1/5), find a less invasive means, increase the dose, and/or start the treatment sooner. So much can still change and improve, based on what happens next with the FDA.
Gene therapy is the next frontier - and like Kirk and his crew, Dr. Maguire and Dr. Bennett have paved the way.
Out of respect for the wonderful researchers and team at CHOP, I have to comply. i will try my best to limit some information that may hurt the trial. If any of you have specific questions, you can message me privately, and I will be happy to answer what I can.
With all that being said, on to Nomi.
Nomi has been doing extremely well. He has adapted and learned to use his new found vision very well. This is probably also thanks to his ongoing maturity.He also has a much more clear understanding of what limitations he has. Blending the two together, he has continued to become more independent.
As an example, his visual acuity has changed. It was Nomi who pointed it out. He noticed that his glasses "didn't work" as well as they use to. His acuity has also improved. He still needs a very strong pair of glasses, but they aren't nearly as thick as his last pair.
At his last IEP meeting at the beginning of April (that's Individual Education Plan - for school) his teacher, Mrs.Caskey, discussed just how far Nomi has come. His school work has gotten better, and he has become much more social. He is less hesitant and afraid to try new things. She is extremely proud of the progress he has made. To her, simply put, the procedure has made him a new child. Mrs. Caskey has done a wonderful job helping Nomi. She is a great teacher. And I am absolutely sure, part of his success is due to her hard
work.
That's it for now folks. Thanks for reading. Again, we appreciate all the love, prayers, and support.
God Bless.
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