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Addie’s TM Story – Blessed to Call Her Mine

Posted by: The Sumaira Foundation in Caregiver, TM, Voices of NMO

Addison “Addie” Havens was a healthy two year-old little girl full of energy and spunk who loved to play with her big brother…

The weekend of January 29, 2016 began like any other but shortly after, Addie came down with a fever. We monitored it and were able to keep the fever down with Tylenol. Saturday came and went. She’d have moments when she would seem as if she was coming down with something and just wanted to be held but nothing extremely alarming. Sunday came and she seemed to be back to her normal self. We went to watch her brother play at his basketball tournament where she played and seemed to have broken the fever.

On Sunday night, Addie went to sleep as she normally did without any trouble. However, soon after she fell asleep, I realized that she couldn’t stop crying in her sleep. When I woke Addie up the next morning, she vomited and the fever was back. I called her pediatrician’s office as soon as they opened and they would be able to see her at 1:00. In the meantime, she went back to sleep. When I woke her up to go to the appointment, I picked her up and carried her to the couch. At this time, the fever subsided, she was hungry, talked, and watched her cartoons as I got her dressed. When she was ready, I put her down to walk to the car. Addie took a few steps and fell. I picked her up and she fell again. I thought to myself, 

“did her legs fall asleep?”

She did it again and instantly I knew something was not right. I rushed to the doctor’s office and Addie was completely unable to walk without holding onto my hand. The pediatrician looked at Addie and told us we could go to our local hospital but most likely they would send us to a nearby children’s hospital.  So, we decided to make the drive to the nearest children’s hospital. Addie screamed the entire way as if she was in excruciating pain. When we arrived, her legs looked almost as if they were crippling.

After about six hours, Addie had lost all ability to stand on her own. She was admitted and scheduled for an MRI the following day. As we were getting into her room, we realized that she had not gone potty all day. The nurse “cathed” her and Addie didn’t even flinch. It was then when the doctors came rushing in and realized that the paralysis was moving up my sweet baby girl’s body!

Addie was taken in for an emergency MRI and the doctors informed us that once she was incubated, there was a chance she wouldn’t be able to come off of it and breathe on her own. The doctors suspected that it was either Guillan-Barré Syndrome (GBS) or Transverse Myelitis (TM) but that the results from the MRI would give us a better idea. She spent the following six hours getting an MRI.

When Addie was in recovery, the doctors brought us in and she was breathing on her own! They began the steroids and IVIG treatments. Addie was diagnosed with Guillan-Barré Syndrome and transverse myelitis. She was unable to sit up on her own and had lost all feeling from the chest down. They transferred her to the pediatric ICU to be closely monitored to ensure that the paralysis did not continue up into her lungs.

After four days in the PICU, we were moved to the 12th floor at Mott’s Children’s Hospital. Addie stayed there for six weeks. She underwent a procedure to have a port placed in her inner thigh so that she could begin the plasma exchange treatments. After three weeks of treatments, steroids, IVIG, and vigorous physical therapy sessions, Addie was able to sit up on her own. The journey to recovery had just began. 

Here we are four years later, after numerous surgeries, more pokes than we can count, hours of physical therapy, emotional ups and downs but Addie is walking again!

She walks with her “walking sticks” for short distances and her chair for the longer ones. She recently had a baclofen placed to help with the spasticity in her legs. She has continued to make progress and pushes through every battle with a huge smile on her face. She will continue to work her hardest and as her parents, we couldn’t be more proud of Addie and her fight!

Told by Amy Havens, Addison’s mother.

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