After a misdiagnosis at their hometown hospital, the parents of Cumberland County preschooler, Lexie, turned to N.C. Children’s Hospital for help.

Hope Renewed: Hope Mills family finds answers at N.C. Children’s Hospital

Just ask Tom and Sharon of Hope Mills, N.C. They’ll tell you there is nothing more frightening as a parent than knowing something is wrong with your child but not knowing what it is or how to treat it.

The first indications something was wrong with their daughter, Lexie, started in her eyes. They noticed Lexie’s eyelids would droop, and her eye movement seemed weak. In addition, Lexie seemed quick to fatigue. Tom and Sharon made an appointment with their pediatrician and were referred to a local community hospital for further testing and diagnosis.

After a misdiagnosis, Lexie’s parents turned to the pediatric neurology specialists at N.C. Children’s Hospital for answers. Lexie’s care team soon diagnosed the condition behind Lexie’s symptoms: myasthenia gravis.

Myasthenia gravis, which means "grave muscle weakness" in Latin, is an autoimmune neuromuscular disorder characterized by variable weakness of voluntary muscles. In many patients, including Lexie, the eye muscles are affected first, but weakness may also affect the arms, legs, breathing or swallowing muscles, and any other muscle group. Muscle control often improves with rest and worsens with activity.

With a proper diagnosis, Lexie's specialists began a treatment plan. Tom and Sharon noticed an almost immediate improvement in her condition.

"The specialists at UNC have done wonders for her," says a grateful Sharon. "They are so knowledgeable. Her physicians are the experts in their field. Dr. (Spencer) Weig is amazing. What she has is pretty rare for her age. It usually occurs in older men, not kids."

Lexie does suffer from side effects from her infusion treatment but is doing markedly better. The next step in her treatment plan may be surgery, says Sharon, but the hope is eventual remission.

Until then, Lexie and Tom travel to N.C. Children's Hospital for infusion treatments about once every two weeks.

"The infusion ladies have been so wonderful and helpful," says Tom. "They go out of their way to help us with lodging when we need it. They fit us into the schedule. We have had an incredible experience."

Sharon agrees. "They are so great with the kids," she adds. "They keep their minds off the treatments with toys, videos, etc. There is so much for her to do, all types of activities. We could not ask for better care."

More about Lexie

Hometown: Hope Mills, NC; Cumberland County — about 160 miles roundtrip
Diagnosis: Myasthenia gravis
Primary pediatric specialties: Neurology; infusion suite in the pediatric outpatient clinic
Frequency of visits: Twice a month
Favorite caregivers "All of them. Everyone has been very caring and genuinely concerned about Lexie and always making sure we’re comfortable and have what we need." ~ Lexie's dad, Tom
Favorite thing about N.C. Children's Hospital: "Lexie's favorite thing is definitely the 'cat hallway.' They've got this hallway in the clinic with different cats painted, and we always have to walk down that at least two times. [ . . . ] For us, her mom and me, it's that everyone's very warm. You're not just a face. You can be any person, it doesn't matter who, and they'll treat you like one of their own family." ~ Lexie's dad, Tom

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