Jenny McGee wants you to play cards. She wants to show you the cosmetics that fill her brown mini-backpack. She wants to look at your cell phone. She wants to talk.

But Jenny  a 13-year-old from Baldwin whose smile seems to make her hospital room sparkle  doesn’t want you to notice she’s sick.

“I won’t tell a lot of people about my diseases, not even some of my closer friends,” Jenny said as she sat in her hospital room receiving the last of two four-hour monthly infusions. “I don’t want to be different. I try really, really hard to be a normal kid. It’s going to take them a while to find a cure, but for now I just want to be normal.”

Jenny was born with several rare diseases  including a rare form of muscular dystrophy  and has spent time in more than five different hospitals. When adopting Jenny at 2 days old, her mother, Debbie McGee, was told to take Jenny home and make her comfortable until she died.

“I said, ‘If you can’t help me, then you have to send me to someone who can,'” Debbie McGee said. “My husband, Mike, and I were not willing to accept that there was nothing we could do.”

‘Amazing’ doctors

It took more than three years and a special team of doctors from Washington University School of Medicine at St. Louis Children’s Hospital to analyze a list of symptoms and diagnose her with four diseases  three of which are rare.

Congenital myasthenia gravis  Jenny’s rare form of muscular dystrophy  causes her muscles to be weak and unable to work properly. She also has chronic immune mediated polydemyalinating disease (CIPD), which causes her to lose feelings in her extremities; ataxia, which causes her to lose balance and requires her to wear a brace; and porphyria, a rare blood disease.

Because Jenny’s adoption was open, her birth mother  who gave Jenny up for adoption because of family problems  was later tested for the diseases, which are genetic. Jenny’s birth mother has now been diagnosed with mild forms of the diseases.

“The doctors told us that they would send her home, but that they would never stop thinking about Jenny or talking about Jenny until they found a way to help her,” Debbie McGee said. “When you’ve been told that your child is dying and there’s nothing else you can do, it’s like God himself is damning your child. But the doctors in St. Louis were just amazing.”

Ten years and several different treatments later, Jenny receives antibodies that kill her own antibodies through a port implanted on her right side, near her rib cage. Attached to the port is a footlong plastic tube that winds around inside her body to allow the infusions to be painless.

But don’t ask the teenager to explain the complicated procedure.

“I’m not a genius,” Jenny said. “I can say everything I have and I know what the machine does, but it’s hard to understand, and I’m still learning.”

Every month Jenny spends about four hours during two consecutive days in the oncology unit at Lawrence Memorial Hospital. The monthly infusions treat Jenny’s rare form of muscular dystrophy and CIPD.

Though finding the best medicine and the best team of doctors was important, Debbie McGee said, it wasn’t what kept her alive.

“Every time that she’s been so sick that we thought we were losing her, she just refused to lay down and die,” Debbie McGee said. “I don’t know what they call that. I don’t know what it is. But I can tell you without it, she wouldn’t be here.”

Challenged  but lucky

Yet Jenny  who likes just about all music except for Enrique Iglesias or Britney Spears  is a normal girl. The eighth-grader at Central Junior High School loves singing, talking on the phone and dancing.

But Jenny hasn’t always loved to dance. She hasn’t always loved to ride her pink Huffy Heartbeat bike either. At one time, Jenny was too weak to do a lot of things.

“It’s harder for me to do things that others take for granted, like brush my hair,” said Jenny, who transferred from Baldwin public schools. “When I first get up, I stumble around and fall. I’m not very stable. I can’t carry a backpack, and I couldn’t ride a bike. I just learned.”

But when she loses her balance and feels the other day-to-day effects of her diseases, she isn’t afraid of dying.

“Sure, I get scared,” Jenny said. “But not about the disease because I’ve grown up with it. It’s heights I’m afraid of. You’re high up and if you fall, you’re in trouble  that’s my theory anyway.”

Sometimes when she does get sad about being different from others her age, she thinks of other children who are less fortunate.

“There are so many kids who are worse than me,” she said with a little more than two hours left of her treatment. “I can walk, run and jump. There are so many kids that can’t even do everything I do.”