After being so enraged by the People Magazine incident (which I blogged about here), I have been very hesitant to share our information with any media, local or otherwise. Â I felt that there was a bit of irresponsibility on their part because much of their information was both incomplete and incorrect, and led to a slew of outrageously offensiveÂ comments from readers. Â Then a couple of weeks ago, NBC Nightly News was puttingÂ together a story about a little girl affected by AFM and they asked for permission to add basic information and photos from other families to their final product.
I wrestled with it a bit. Â On one hand, I want to help spread awareness about what happened, how it has changed our lives, and what we’re doing about it. Â If even one person is inspired by our Mighty Warrior, then it’s worth putting ourselves out there. Â On the other hand I can’t help but wonder what good it will do in terms of finding a way to prevent this from happening to other children in the future.
In the end I decided to share Ryder’s information. Â Soon after that, TIME Magazine expressed their interest in talking to families of children with AFM. Â You can read the article (in which I’m quoted)Â HERE.
I appreciated the way the journalist caught on to the frustration we’re all facing. Â Since no two children have presented identical symptoms, diagnoses are often different, which leads to inconsistencies in data and often disqualifies the information from being reported to the CDC. Â Ryder is one of the children who tested negative forÂ everything, including EV-D68 and EV-D71. Â As I’ve said before, discovering the root cause of the paralysis makes no difference for us because it wouldn’t change our course of treatment. Â However, it could lead to developing a vaccine or some other method of prevention so that no one else has to suffer.
And since I haven’t given an official status update in a while, now’s as good a time as any. Â We haven’t experienced any significant changes lately. Â Ryder’s overall strength continues to slowly increase, which is a blessing. Â For the time being, we are concentratingÂ our therapy efforts on strengthening his deltoids, biceps, and triceps with the hope of regaining the ability to lift his arm. Â He has definitely experienced some atrophy, which is most visible around his shoulder joint, but it’s not as bad as it could be and may have even gotten a little better over the last week or two (unless it’s just a mama’s wishful thinking).
We’re looking forward to signing him up for his third soccer season, and this year Evan’s finally old enough to play, too. Â He hasn’t skipped a beat as far as school is concerned, which is another huge blessing.
Please continue to join us in prayer for the complete healing of those already affected, and for the protection of everyone else!
***Edited to add a link to another article fromÂ Good Housekeeping Magazine.