Advertisements

YouTube Videos

YouTube Videos

YouTube Videos

I have been working hard on these YouTube Videos.  It has been emotionally draining watching each and every video I have taken of Hunter.  My goal is to bring awareness to Opsoclonus Myoclonus Syndrome.

Misdiagnosis

Hunter was misdiagnosed MULTIPLE times over the course of the 2 years that he got sick.  OMS is so rare.  I believe the stats are now 1 in 5 million.  It takes on the appearance of Acute Cerebellar Ataxia, Cerebral Palsy, or Muscular Dystrophy.  So many cases are misdiagnosed because it is hard to tell between the different eye movements.

List of Eye Movements

Ocular Flutter

Opsoclonus

Strabisimus

Esostropia

Exotropia

Nystagimus

Saccades

What that kind of list, it is easy to get confused and told one thing when it is really another.

What the Videos will Be

Most are of Hunter that will range from when he moved in with us in late 2015 (before onset) to present.  I have tried to video as much as I can.  These videos were originally created for documentation and to send to specialists.  There are not local doctors who are familiar with this condition.  Traveling is just a part of our life now.

Also, there are some other videos that just make me giggle.  Some are of our animals, vacations, cleaning/organizing, etc.  It has been a mixture of laughs and tears in going through all these videos.

End Results

If you want to follow his journey, I will be posting a video, daily.  You can go to Brandi Crum or The Barefoot Homeschooler YouTube channel and hit that red “subscribe” button.  At 6 am, daily, a video will be viewable.

Please feel free to share that link or ask questions!  If you know of someone who is dealing with any of the symptoms you see…reach out!  I do not want ANY family to go through what we have gone through.

Related Posts:

New Video from NORD

The Results of MIBG Scan

The Little Squares of Life

Reflecting on Getting Fitted for a Wheelchair

Happy Birthday Daniel

 

 

Get Free Email Updates!

Signup now and receive an email once I publish new content.

I agree to have my personal information transfered to MailChimp ( more information )

I will never give away, trade or sell your email address. You can unsubscribe at any time.

Advertisements

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: