Meghan Wellnitz's blonde curls, shoe obsession, "Daddy's Little Princess" T-shirt and upcoming Make-A-Wish trip to Disney World lend this 4-year-old Wadena resident the appearance of a perfectly normal girl.
However, "normal" holds a different definition for the Wellnitz family when speaking of Meghan and her siblings. Doctor visits, medical research studies and worries about health insurance comprise the everyday language of this household affected by three diagnosed cases of DiGeorge Syndrome, a relatively rare chromosomal abnormality affecting one in 4,000 births.
"She's a normal little kid," said Lisa Wellnitz about her daughter Meghan, who has the most severe case of the syndrome. "She just has a little bit of trouble with these illnesses."
The Wellnitzes encounters with DiGeorge Syndrome have required learning a new vocabulary full of medical terms as an illness they didn't even know existed four years ago has taken over their lives.
Meghan has full-blown DiGeorge Syndrome, while her brother Matthew, 6, and sister Carly, 3, all have milder forms of the disease caused by a large deletion of a certain chromosome. She possesses 30 of the 188 possible abnormalities caused by the syndrome, including asthma, seizures, heart disease, lung disease, acid reflux disease, pulmonary stenosis, delayed speech and a susceptibility to aspiration pneumonia. Meghan also has some of the facial features associated with the disease including slanted eyes, minor ear deformities and extra teeth.
Lisa experienced a normal pregnancy until Meghan arrived seven weeks premature on Feb. 17, 2002, at Perham Memorial Hospital, unable to maintain her oxygen level.
"They knew something was wrong," Lisa said, recalling her daughter's delivery. "She was purple and blue."
Doctors quickly transported Meghan via helicopter to St. Cloud Hospital where she was diagnosed with DiGeorge Syndrome before sending her to the University of Minnesota Children's Hospital, Fairview.
Meghan underwent three open-heart surgeries during the first four and a half months of her life at the University of Minnesota.
"They kept finding more and more stuff wrong with her," Lisa said. "They didn't think she was going to walk, talk ... or survive past her first year. She's kind of proved all the doctors wrong."
The medical staff equipped Meghan with a G-tube to help her swallow and oxygen to help her breathe before releasing her home to live with her big brother, mother, and father, David Wellnitz, at Pine View Acres Mobile Home Park--a place where Meghan has learned to love playing with the family dog, Jake, and watching "Dora the Explorer."
Meghan's fondness for cartoon characters inspired a representative from the Minnesota Make-A-Wish Foundation to plan an all-expense paid trip for Meghan's entire family to go to Orlando, Fla., in August. The fun-filled vacation includes a three-day pass to Disney World, a two-day pass to Sea World and a one-day pass to Universal Studios. The foundation awarded Meghan a wish several years ago, but her doctors only recently gave her the OK to go on the trip.
Meghan's long-time physician, Mark Paulson at MeritCare in Perham, said the trip should be a great experience for his young patient and her family.
"It's something positive in her tough life that she's had so far," he said. "They have struggled with health issues way more than is fair for any family. I think this is just a great escape for them."
Lisa looks forward to a vacation full of fun times with Mickey and Minnie and water adventures with dolphins at Sea World and, most of all, a trip with no doctor's appointments for her daughter. She said the farthest Meghan has traveled from home is the Twin Cities and those trips were all for hospital visits. For the first time in their lives, the Wellnitz kids will also have an opportunity to meet other children with DiGeorge Syndrome. Lisa said Meghan is not allowed to have contact with many children due to her weakened immune system.
"I hope that she gets to have fun," Lisa said. "She's so shy I think it'll help her to get more out and to develop more sensory [skills], especially when she sees the dolphins."
A nurse equipped with an oxygen tank will accompany Meghan during the plane ride in case of any mid-air emergencies due to her heart problems. Even though Lisa is excited about the vacation, she worries about Meghan becoming ill before the trip even begins.
A bout with aspiration pneumonia in February that landed Meghan in the intensive care unit for four days reminded Lisa of how fragile her daughter remains. Meghan was attending early childhood special education classes at Wadena-Deer Creek when she suddenly became ill.
Theresa Siever, early childhood special education teacher, said she has to remain aware of Meghan's condition.
"You could just see in her eyes that she wasn't feeling well," Siever said. "We took her temperature and it got really high, really fast."
Lisa said the doctors flew Meghan from the hospital in Perham to Fargo because they thought she was going into heart failure.
"She had a fever and a hard time breathing and then all of sudden she turned around and she was fine," Lisa said about the dramatic shifts in Meghan's health. "That's how this syndrome makes kids, they get so sick so fast."
Matthew and Carly's DiGeorge Syndrome is not as life-threatening as Meghan's, but still profoundly impacts their health and development. Lisa said Matthew has behavior issues like Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder due to the disease and Carly has thyroid problems. She said all of the children have weak immune systems that make them susceptible to illness.
Siever said it is obvious Lisa's first priority is her children's health.
"The mom is just really on the ball," Siever said. "She really knows their needs. It's a lot with three of them. They all have different needs."
One of the family's major needs is health insurance. Lisa said she and her husband have to watch their work schedules so they don't exceed the income requirements for state insurance. She said they tried to obtain regular health insurance when Meghan was born, but couldn't because of her extreme health problems.
"The thing I worry about the most is Meghan's health insurance," Lisa said.
Lisa works part-time as a nurse's aid at Fair Oaks Lodge and attends nursing school part-time at Minnesota State Community and Technical College--Wadena.
"It's my break," she said about her work and school schedule.
David's work for C&K Enterprises takes him away from home during the summer. Lisa said he has limited phone access and she goes days without hearing from her husband.
Neither David nor Lisa have been tested for DiGeorge Syndrome, but Lisa said a doctor who will conduct a research study next summer involving Meghan at Harvard Medical School wants the couple to explore their own medical condition.
"The kids come first," Lisa said explaining her and David's most immediate health concerns.
While the Wellnitzes remain preoccupied with their present medical problems and the uncertainty of Meghan's condition, they remain hopeful about the future.
Lisa said many churches around the country are praying for Meghan and she believes this has helped her daughter. She also hopes new medical research will help her children and other children with the disease.
"That's one thing we've been praying for is a cure for the DiGeorge Syndrome," Lisa said.