THE SDBB Community helped Porter Olson last Summer! Porter is the son Tanner and Lisa Olson of Tea, SD.
Update that seems to never change, except for on Porter.
Porter has been showing significant changes over last 4 weeks with legs giving out and changes in both arms and legs.
Mayo ordered stat MRIs of brain and spine.
Yesterday, MRIs negative. They drew one more genetic test through university of Chicago.
Rare diseases and genetics say unfortunately they don’t know what is happening to Porter and if this last genetic test is negative, they will continue to help with symptoms and devices that he will need as Porter's symptoms progress.
Mayo will email John’s Hopkins to get more eyes on him but not sure they have more to offer.
On exam, they confronted Porter in the hallway and asked him if he needed to think in order to walk. Porter was hesitant to answer but did say yes and that this was new for him and frustrating. Genetics said they can see it on exam and feel Porter has had significant changes, since last seen.
Tanner and I feel terrible but know we have to give it to God. We don’t understand how someone can have so many physical changes and the root can’t be found. Mayo did say there is a population of people like this and asked us to reach out to a family in Switzerland that lost all three of their kids to "unknown/rare diseases". Saying we needed to start understanding that we may never find answers for Porter.
Porter says he will try living his best life! I know he is frustrated and scared. He said he doesn’t think they will ever figure him out and wishes he was just normal.
Feels wrong that we just watch him deteriorate but understand they don’t know what to do. Genetics said he still shows classic signs of the CMT2 but feels his EMGs would have been positive due to all of his physical findings.
Porter is progressing and we just need to be there for him and help him push through the trial and tribulations that come with it. We will continue to ride the waves and have faith he will be ok.
We can't thank you enough for all the support and love!
Lisa Olson
