Exon Deletion 52

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  • Holly Cahoon

    I feel horrible, haven't been on this website in forever. We really didn't hear much from our study in Ohio.
  • Kristin Linke

    I know, I wish more people would be more active on this site. I could use more emotional support. We are all going through or will go through similar issues. Sorry to hear that you have not heard back from the Ohio study. Gavin is going to CHOP for an MRI Study. I don't want to do medical trials yet. I have not put him on Steroids yet. The side affects are worse than what the boys are going through. The side effects are not worth an extra year of them walking. We choose quality of life. We know that eventually we will have to put them on meds, but not yet.

  • Nithya

    Hello Everyone

    My son Aditya is 8year old and has single exon 52 deletion.
    We are looking for exon skipping therapy.
    Is anyone of you getting exon skipping therapy done for your kids.
    Any inputs on this would be very helpful.