Emma Vickers is at St. Louis Children’s Hospital where she is receiving treatment and therapy for a rare medical condition known as transverse myelitis. She is pictured here with her parents, Lynnette and Glenn, and her brother, Levi. A fundraiser to help the family is planned for March 16, at the Knights of Columbus Hall in Jackson. Submitted photo
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Community plans fundraiser for family of Oak Ridge youngster with rare medical condition

by Elane Moonier ~ Features Editor

Spunky, feisty, eight-year-old Emma Vickers is truly facing a unique challenge.

In January of this year, she was diagnosed with a very rare condition known as transverse myelitis, which left her paralyzed from the chest down, turning her world and that of her family upside down.

The Vickers family is discovering, however, that folks in their community and many people they don’t even know are anxious to help them in their battle.

Lynnette Vickers, Emma’s mother, said that her daughter started complaining about her back and abdominal muscles hurting on New Year’s Eve.

“On New Year’s Day, her abdomen was so sore I could barely touch it,” Lynnette said.

With doctor’s offices closed, she and her husband, Glenn, took Emma to a walk-in clinic where they did blood work, which showed nothing out of the ordinary.

They believed she had pulled some muscles and sent the family home. The following day, Lynnette knew something was not right, and she took Emma to their doctor.

They did an x-ray to see if there was blockage causing constipation and began treating her for that.

On Thursday, Emma’s legs started to get weak and she started throwing up. They took her to ER, where she was admitted and treated for dehydration and constipation.

Even with this treatment, Emma could not feel her legs at all, and they convinced the hospital staff to do an MRI, which revealed that her whole spinal cord was inflamed.

“We are very fortunate that the doctor on the night staff had just finished his residency at Missouri University, and he knew right away that it was something along the lines of transverse myelitis,” Lynnette said.

The physician called St. Louis Children’s Hospital and spoke with other doctors there, who agreed that Emma should be transferred to that hospital right away.

At Children’s Hospital, the diagnosis of transverse myelitis was confirmed, and they began treating Emma with steroids through an IV every six hours for the next five days. At this point, she was already paralyzed from the mid-chest down.

The steroids helped stop the paralysis from moving up her body, Lynnette believes. On Monday, Jan. 7, further extensive testing confirmed that Emma did not have multiple sclerosis, a related disease, as there were no lesions on the spinal cord.

On Friday, a catheter was placed in Emma’s neck so she could begin plasmapheresis, a plasma exchange therapy where the blood is drawn out and the plasma with antibodies removed and replaced with a plasma substitute, then put back in.

The overactive antibodies in her blood were causing the inflammation in Emma’s spinal cord, thus creating the paralysis. During this time, Emma developed pneumonia and a collapsed lung.

She was placed in Intensive Care Unit for five days where she had respiratory treatments every two hours, and the plasma exchange continued.

On the night of Jan. 14, while still in ICU, Emma had slight movement in her feet but not a lot of feeling. It was decided to continue with two more plasmaphersis treatments which would be the maximum of seven allowed.

On Jan. 23-25, Emma began slowly getting some movement back in her feet and legs and now has feeling almost everywhere in her lower body, except for the waist area, which she describes as “still fizzy.”

Transverse myelitis is a very rare condition, with only 1,400 cases reported per year in the United States. It is caused by inflammation of the spinal cord and causes weakness of the muscles in the legs and arms, bowel and bladder dysfunction and other related symptoms. It is not the polio type syndrome that is being reported.

The cause remains a mystery at this point, and there is no set cure and no set treatment.

Some patients respond well to steroid treatments while others do not. Some have 100 percent recovery while others have only 50 percent, and the period of time for this recovery can be months or years.

Emma is undergoing intensive physical therapy treatments, standing with a walker, working with parallel bars, using a wheelchair and attempts at walking.

Lynnette said she cannot walk by herself yet as her leg muscles are weak, but she is working very hard to get to that point and makes a little progress every day.

“It is amazing how she is dealing with this,” Lynnette said. “Right now she is doing great. Her spirit is phenomenal, and she can’t wait to go to therapy. She never asks if she is going to walk again, but always says when I do walk again. She also can’t wait to go home and get back to school.”

Lynnette said that after Emma is discharged from the hospital, she will have intensive outpatient physical and occupational therapy four to five days a week, and it is unknown when she will be able to return to school.

Lynnette has been at the hospital with Emma every day from the very beginning. She is employed with the State of Missouri, and she is eligible for FMLA (Family Medical and Leave Act) for 12 weeks.

Glenn, who works at M&M Meats in Perryville, has been taking care of the home and their son, Levi, age 10, during the week, with the two of them coming to the hospital in St. Louis on the weekend.

”I know this is very hard on him and on Levi who has never been apart from his sister,” Lynnette said.

The financial burden is weighing heavily on the family also, with Lynette receiving no pay while she is on leave and Glenn taking extra time off to take care of Levi and their home.

Family, friends, neighbors and strangers are putting forth an overwhelming effort to support Emma and her family, said Cathy Rood, Lynnette’s sister. “There are so many good people out there, and they all want to help in whatever way they can.”

A fundraising event is planned for March 16 at the Knights of Columbus Hall in Jackson, from 4-9 p.m. A meal will be served, which will include pulled pork, slaw, baked beans, chips, dessert and drinks. Tickets for this are $10 in advance or $12 at the door.

There will be a live auction, which will include a huge variety of items such as a whole hog, fire rings, loads of gravel, quilts, and much more.

There will also be a silent auction with many varieties of baskets filled with everything imaginable. There will be a gun raffle with items provided by Drum Hunting Supplies, a quilt raffle and a 50/50 raffle.

Emma, a student at Oak Ridge School, helped design a special t-shirt which is being sold to help raise funds. The blue shirt features a butterfly and the ribbon signifying transverse myelitis.

The shirts are $15 each and can be ordered by contacting Cathy at 573-225-3913 or Laura Cassatt at 573-225-1913. You can also order by messaging on the Facebook page, "Emma’s Unique Journey."

Orders must be received no later than March 1. Anyone who would like to help with the fundraiser or make a donation can contact Cathy or Laura. You can follow Emma’s journey on the Facebook page.
 
 

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