Social - July 2003

Family takes rough road to recovery

Morgan and her parents battle rare childhood disease

By DIANE TURBYFILL, LTN Staff Writer

Four-year-old Morgan Silver descends the stairs and runs over to her swing set. As she laughs and swings, her parents reflect to just two months ago when her current actions were impossible.

The blond-haired little girl had gone from active and independent to emotional and immobile.

“I had to dress her just like she was an infant,” says Morgan’s mom, Nikki.

After a five-month battle, Morgan has been diagnosed with and is fighting a disease called juvenile dermatomyositis (JDMS).

Before the disease

Morgan spent her days like many 4-year-olds. She attended First Presbyterian Church Preschool and loved gymnastics. She enjoyed playing with her little brother, Chase, and visiting her grandparents.

Many afternoons, Morgan spent time jumping on her trampoline, practicing for her dance recital and looking at books with her parents.

But her life took a dramatic change earlier this year.

A fast decline

Morgan developed the flu in February.

“She’s never really even been sick except for maybe a little cold,” says Tim Silver, Morgan’s dad.

Her low-grade fever didn’t seem to concern doctors. They advised treating Morgan with Tylenol and keeping an eye out to make sure her temperature didn’t go higher than 101.

In March, Morgan developed a rash under her arm, and her face developed a slight purplish tint.

They went back to the doctor where she was diagnosed with eczema.

“(The rash) would never go away no matter what kinds of creams and lotions we used,” says Nikki.

By April, Morgan began having physical problems. She couldn’t bend over to tie her shoes. Sitting Indian-style was a struggle.

“Tim would go to get her out of the car, and she couldn’t wrap her legs around him,” Nikki describes.

Nikki remembers taking Morgan to an Easter egg hunt in April. Instead of running through the lawn competing to find as many eggs as possible, she just stood in place.

“It was like bending down to pick up an egg was entirely too much trouble.”

By May, things had gotten unbearable.

Morgan had seen a doctor who diagnosed her with muscular dystrophy.

Nikki began researching the disease on the Internet and did not agree with the diagnosis.

Searching for a diagnosis

While doctors examined Morgan, Nikki conducted her own troubleshooting at home. She searched every day on the Internet, wrote friends and spread the word.

Morgan’s grandparents also asked around. A friend of theirs said they knew someone with a child who had similar symptoms. Nikki emailed the Lincolnton woman to inquire.

Her new friend said her child had JDMS and suggested she get an appointment at Duke University Medical Center.

Nikki wasn’t so sure about the diagnosis, but it gave her a lead. She made the appointment at Duke and began surfing the Net to learn more about the disease.

She looked at business and personal diary pages.

“In the mean time, it was every day she could do less,” says Nikki. “I thought, ‘I cannot watch her suffer like this anymore without knowing what’s wrong.”

The days were spent researching, but the nights were a little more difficult.

“At night after the kids would go to bed, we would lay in bed and cry,” Nikki says.

As Nikki researched JDMS, she found more and more cases that were similar to Morgan’s. Nikki called her friend and got the phone number to Duke Rheumatology.

Within a week — on June 18 — the Silvers were in Durham getting the diagnosis they had been searching for.

Curing the disease

After being examined by two doctors, Morgan was diagnosed with JDMS.

She was admitted to the hospital immediately. Nikki stayed in the hospital with Morgan.

The little patient was put on a high dosage of prednisone.

And the results were immediate.

Nikki and Tim remember walking into the room the first morning after Morgan had been admitted.

Morgan was walking around, picking up toys and playing with other children.

“I don’t think a zillion dollars could compare to that feeling,” Nikki says.

Morgan was released from the hospital after three days.

“In the first week back, she was ready to go,” says Tim.

She will return to the doctor next week for her first check-up since being released.

Returning home

Things have returned to normal in the Silver’s home.

Morgan runs around playing with her brother, Chase. Some days she feels up to swimming, running and playing others days, not so much. But her parents are happy for every movement.

“What she’s doing now is remarkable,” Tim says.

“It’s been a hard road,” Nikki says.

Morgan takes doses of prednisone, calcium and plaquonill daily. The prescriptions are a small price to pay, Nikki and Tim say.

“We’re hoping that in a year she’ll be back to her normal dancing self,” Nikki adds.

© 2001 Lincoln Times-News  

Terms and Conditions