In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  It is important to bear in mind that all newsletters and journals are archived on our web site.  Should someone do an internet search of your name, your article is likely to be identified in their search results.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

My Daughter, Megan
Lisa Hoersten
Delphos, Ohio

My daughter, Megan, was 10 months old when she was diagnosed with Transverse Myelitis.

It all started on a summer day in June of 2007.  One day she was a happy, healthy little girl, and within hours, she was totally paralyzed from her legs down.  Her arms were weak and all she would want to do is lie around and be held.  We assumed she was constipated from some of the signs we saw.  Finally, when she wasn’t getting any stronger, we called the doctor.  When we called that night, the doctor was not really worried, because she was eating and still drinking.  The first thing the next morning, we went to see the doctor.  She never hesitated and sent us directly to the ER.

Megan was like a newborn all over again.  She could hardly move her arms.  It seemed like it took everything she had to hold her head up. My poor little girl was helpless and we had no idea what was wrong with her.

We were at the ER for seven hours.  They were running all kinds of tests and were finding nothing. As a parent, that was really frustrating and our emotions were starting to unravel. I am her protector and they are not finding what is wrong with her.  I was getting short with the doctors.  You want answers now, and they did not have any answers.  I have to say, first of all, that I do not have a lot of patience, so being in a situation like this was really difficult.

Finally, we decided to go to a different medical system.  So, we headed to Children’s Hospital in Columbus, Ohio.  It is about two hours away, but it was worth it.  We got there and they put her in NICU so that they could observe her more closely.  On Saturday, they ran a test on her that ruled a few things out and on Sunday (Father’s Day) they diagnosed her with TM.  

It was a relief, in some sense, just knowing what she had so that now they could fix it. We soon found out that it was not that easily fixed.  We had a long road ahead of us. It has been a road on which we’ve learned to rely on each other, all of our friends and family; and a road on which Megan’s mother has learned some patience.

It has been a year since the onset of TM.  Today, Megan is a healthy two year old. She is completely off all of her meds.  She is up to par on her occupational therapy, so she is no longer doing that and her Physical Therapy is going well.  She is walking with her walker and getting stronger everyday. It also helps that she has her older brother to keep up with.
We look back at pictures we took while she was in the hospital, and it is hard to believe that she has made so much progress within one year.  I thank G-d everyday for having given us the strength we’ve needed to get through this experience.  Our road to recovery is far from over as Megan continues to progress.  She is a very determined little girl and I thank God for that everyday.