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Friday, October 1, 2004
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Rare syndrome strikes girl 'I want to go home, Mommy' Staff Writer NISSWA -- A 5-year-old Nisswa girl who loves to dance and perform gymnastics is now hospitalized in Minneapolis, after waking up Sept. 22 suddenly paralyzed from the neck down.
Darby Rayne Richmond, the 5-year-old daughter of Tisha Richmond of Nisswa and Dave DeLong of the Twin Cities area, is hospitalized at Children's Hospital in Minneapolis.
The Nisswa kindergartner complained of a stomach ache on Sept. 22 at Lil' Angels Child Care in Nisswa. Diane Townsend, her day-care provider, said she and her young charges were sitting in a circle during an activity when Darby said her belly hurt. That night she complained to her mom that she again felt sick, that her back hurt, and so her mom gave her some Tylenol, a warm bath and a back rub before she went to sleep.
When Richmond went in to wake up her daughter the next morning, Darby was limp. She couldn't lift her arms or move from the neck down. Frightened, Richmond rushed Darby to the emergency room at St. Joseph's Medical Center in Brainerd and then she was airlifted the next day to Children's Hospital in Minneapolis. The young girl, who has been on a ventilator since she was hospitalized, was diagnosed at Children's Hospital with transverse myelitis, an uncommon neurologic syndrome caused by inflammation of the spinal cord.
Richmond, who has been at her daughter's side since she was hospitalized, said doctors believe they will never know how Darby contracted transverse myelitis. It can strike people of all ages at any time. Darby's blood tests revealed she didn't have any virus or bacterial infections. An infection can cause a person's own immune system to abnormally attack the spinal cord and cause the inflammation and tissue damage associated with transverse myelitis. The syndrome can be similar to other autoimmune diseases, where the materials that insulate the nerve cells are attacked by a person's own immune system, like rheumatoid arthritis and multiple sclerosis.
Doctors have given Darby heavy doses of steroids to reduce the swelling which caused her paralysis. The swelling has somewhat subsided and she is slowly beginning to move but has little strength. She remains on a ventilator and doctors are trying to wean her off the ventilator about an hour each day. She recently started physical and occupational therapy. It could take years for Darby to regain her strength and muscle skills. Because of this disease, she will have to relearn everything she's learned during the past five years, like swallowing, eating, sitting and her bowel functions. Darby also may become permanently disabled because of transverse myelitis, but that's something Richmond said she refuses to think about at this point.
She simply wants her baby girl to get better.
How to help
-- A fund has been established to help the family of Darby Rayne Richmond, a 5-year-old Nisswa girl who suddenly fell ill Sept. 22 with an uncommon neurologic syndrome caused by the inflammation of the spinal cord. She is now hospitalized at Children's Hospital in Minneapolis.
-- Her single mother, Tisha Richmond, has no health insurance coverage.
-- Donations to help the family may be sent to the Darby Rayne fund at all Lakewood Bank locations in Brainerd, Nisswa, Baxter and Crosslake.
-- To read updates on Darby's progress and to leave messages for her and her family, check out her family's Web site at www.caringbridge.org/mn/darbyrayne.
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Darby, said Richmond, is a 5-year-old little girl trapped in a 2-week-old's body. Darby understands what's going on and tries to communicate despite being on the ventilator.
She often mouths to her mom, "I want to go home, mommy."
It's heartbreaking.
"It's hard," said Richmond. "No one wants to see their little baby in bed, hooked up to everything. It's wrong."
"She's still in shock, I know she is," said Townsend, of Richmond, who is also a friend as well as Darby's day-care provider.
Darby was only able to go to kindergarten for a few days before she became sick. She loved school, especially the bus ride.
"She loved it," said Richmond. "She loves school. She made new friends on the bus, that was her favorite. The bus ride."
Richmond has remained by her daughter's side since she became ill. She works as a resident counselor at a Pine River group home and unfortunately, had no health insurance for her or Darby. With the mounting medical bills and not being able to work, Richmond isn't sure how she is going to get by. Right now she's focusing all her energy on her daughter.
"It's going to set me back about 200 years," said Richmond, speaking of the financial toll of Darby's medical bills. "But you know what, I don't care. Whatever it takes."
Townsend has established a fund at Lakewood Bank called the Darby Rayne fund where people can make a donation to help Richmond and her daughter with their mounting bills.
Darby, said Townsend, is a special little girl.
Darby was enrolled in a dance class through Pine River-Backus Community Education and she loved it. She would watch the videotape of herself dancing in last year's dance show over and over again, learning the dances that the older students performed, too. Richmond thought it would cheer her up to show her the dance tape at the hospital. But when tears began to roll down Darby's cheeks, she knew it was too hard for her daughter to watch those anymore. She may be 5, but the little girl understands she's unable to walk, much less dance right now.
Darby also is enrolled in gymnastics through Brainerd Community Education. She was determined to learn how to do a one-handed cartwheel that she practiced over and over again, happy when she finally accomplished her goal. She does so well in gymnastics that Richmond said Darby was bumped up to the first-grade gymnastics group.
"She's an awesome little kid," said Richmond, of her daughter. "People can learn a lot from her. I've learned a lot from her. She's an angel. Wherever I go, she's right behind me or right in front of me. We do everything together."
Richmond is counting on her daughter's fighting spirit to get her through this debilitating disease. Relearning all her skills will be a bigger task than a cartwheel, but Darby isn't one to give up easily.
"It's not in her to give up," said Richmond. "When she wants something she works really hard at it."
JODIE TWEED can be reached at jodie.tweed@brainerddispatch.com or 855-5858.
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