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-   -   Please pray for my son (http://www.socnet.com/showthread.php?t=133320)

MixedLoad 5 September 2019 15:12

We are all rooting for him. Thanks for the update.

Stretch 5 September 2019 16:15

Good news!!!

wildman43 5 September 2019 16:28

Quote:

Originally Posted by just11b (Post 1058813640)
Closing in on a year since Alek was dosed with Zolgensma and he continues to work hard at trying to walk. Not only is he improving with his overall strength, but his breathing, and appetite are also that of kids without SMA in his age range. I thank God every chance I get. The only support I have relied on has been those of you from SocNet, and I can not say thank you enough to truly convey how fortunate my family and I have been for your help. Thanks everyone for your support. It means the world to me.

https://youtu.be/ukrqC-LFfZk

That youtu.be was outstanding to watch an to see how much he has grown an the help you do with him. You both are doing a great job. keep the youtu coming with updates. :smile:

just11b 23 November 2019 10:15

Aleksander has ended the STRONG study clinical trial in mid October due to his completion as a participant. However, the trial has been placed on hold for those still participating and awaiting for enrollment, due to negative side effects reported in every primate dosed with the gene replacement. Novartis did not disclose the results with the FDA when they were applying for approval status for reasons known to them.

As of today, no negative side effects have been found in Alek, and he continues to make progress.

We were once again blessed to be given an opportunity to continue in a new clinical trial for another drug (Risdiplam) about to be approved, that is given orally versus intrathecal injections, and works by enhancing the protein created by the SMN2 gene. This new trial is testing combination therapy, as Alek was dosed with Zolgensma 13 months ago. The scary part of this new drug, is that it made the primates tested, go blind. The blindness started peripherally and since the primates had no way of communicating the issue, it was not caught until total blindness occurred. The company that created the drug could not find what caused it, so they threw out batch A, and went with batch B to eliminate (they hope) future problems.

This new clinical trial is 5 years in length and has us continuing our travel to Orlando frequently. Every 2 months now, versus every month. I feel I made the only choice available, as this disease is unforgiving and in the first 5 years does the most damage. Alek is 5 days into the new drug and I am excited, but nervous.

Sorry for the long response, I tried to condense it as much as possible.

Gsniper 23 November 2019 10:20

Hope it works as designed and the side effects are minimal. Best of luck to you and the little man.

The Fat Guy 23 November 2019 11:30

Quote:

Originally Posted by just11b (Post 1058826905)
Aleksander has ended the STRONG study clinical trial in mid October due to his completion as a participant. However, the trial has been placed on hold for those still participating and awaiting for enrollment, due to negative side effects reported in every primate dosed with the gene replacement. Novartis did not disclose the results with the FDA when they were applying for approval status for reasons known to them.

As of today, no negative side effects have been found in Alek, and he continues to make progress.

We were once again blessed to be given an opportunity to continue in a new clinical trial for another drug (Risdiplam) about to be approved, that is given orally versus intrathecal injections, and works by enhancing the protein created by the SMN2 gene. This new trial is testing combination therapy, as Alek was dosed with Zolgensma 13 months ago. The scary part of this new drug, is that it made the primates tested, go blind. The blindness started peripherally and since the primates had no way of communicating the issue, it was not caught until total blindness occurred. The company that created the drug could not find what caused it, so they threw out batch A, and went with batch B to eliminate (they hope) future problems.

This new clinical trial is 5 years in length and has us continuing our travel to Orlando frequently. Every 2 months now, versus every month. I feel I made the only choice available, as this disease is unforgiving and in the first 5 years does the most damage. Alek is 5 days into the new drug and I am excited, but nervous.

Sorry for the long response, I tried to condense it as much as possible.

Godspeed, brother. Our prayers are with you.

Mars 23 November 2019 11:35

Thank you for the update. My family and I will be praying that the drug does what it is supposed to do with NO side effects.

bobmueller 23 November 2019 11:50

Always appreciate the updates. Continued grace and peace and strength to your family.

bullet65 23 November 2019 18:44

prayers for your son and for your family staying strong

usmc_3m 23 November 2019 20:15

Continuing to send prayers to you and your family for the best possible results.

CV 23 November 2019 21:15

This thread has been great to go back and read through.

Hopeless Civilian 24 November 2019 00:18

Continued prayers for you son and your family! We're rooting for him!

Stretch 24 November 2019 01:29

No reason to be sorry. You and Mrs. just11b are doing everything y’all can.

The stronger you are, the stronger Alek will be...

Prayers out.

S

wildman43 24 November 2019 02:47

Godspeed, brother. prayers are to all of you

billdawg 24 November 2019 21:28

fingers crossed and prayers out brother.


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