Back To School InSpirations

While back to school for many students means new clothes, backpacks full of fresh notebooks, and setting the alarm clock once again, it can also be the start of a new routine of daily medication, well-scheduled doctor's appointments, and explanations. In addition to the daily challenges of learning new math facts and keeping up with homework, some students have the added responsibilities that come with a chronic health issue.

Four area students and their families shared the amazing stories of what makes up their daily lives. While these children and young women just want to be treated like any other school student, their courage and determination to rise above their diagnosis is certainly inspiring.

Gianna Spittel is one of the bravest and most charming four-year olds around. The Spittel family, Rich and Karen, and children Gabie, Dominic, Tashi, and Gianna, live in Mayville. Gianna will be starting in the 4K program at St. Mary's School, where her mom also teaches.

Gianna was diagnosed at 18 months old with a very rare inoperable brain tumor. Her type of tumor accounts for less than .1% of brain tumors. This tumor and the location elevates her growth hormone and cortisol levels, causing rapid weight gain that cannot be controlled by diet.

"Because Gianna got sick while I was teaching at St. Mary's, it is just known through the school," Karen explained. "Because of the way she looks, we want to let kids know what is wrong. Sometimes kids, just being young and not knowing any better, will make fun of her and say things that hurt her feelings."

To introduce herself as the classroom teacher, Karen always sends home a letter before the school year begins. She explains a little about her family and the fact that she may miss some days because of Gianna's appointments at the Mayo Clinic in Minnesota.

"Everybody is really good with it," Karen said. "If I have to miss class I have the same substitute teacher every time so there is consistency. We've planned for all of that. We do a lot of planning as a family with school schedules and homework and making sure lunches are packed. We run a tight ship."

Gianna has been in daycare at St. Mary's, so the transition to 4K should be seamless. She is looking forward to lots of coloring when she starts school. Gianna can do just about anything that would be expected of any four-year old at school Ñ she loves to sing, take care of her dolls, and draw rainbows. She does take daily medication, uses a machine for her breathing while sleeping and sees a variety of doctors every five weeks who monitor the growth of the tumor and its many side effects.

In February of 2010, Gianna was granted her wish to visit Disneyland through the Make-A-Wish Foundation. It was an experience the whole family was able to enjoy and one that Gianna still talks about. It was an amazing opportunity for the family Ð it was Gianna's first time on a swing and a slide, she was able to ride the carousel as many times as she wanted and it was a day when Gianna Spittel was recognized as the true princess she is.

"There is no cure for her and probably no way to slow the tumor down, so every day we have with her we just try to make it good and not worry about what people think or what people say to her," Karen said. "No matter what she looks like on the outside, she's fun, she's smart, and she's just like every other kid."

Courtney Vander Galien was one of the youngest children to be diagnosed with Juvenile Rheumatoid Arthritis at 13 months of age. JRA is an autoimmune disease, and according to the Arthritis Foundation, no one fully understands why the immune system, which is designed to protect the body from foreign cells, instead attacks the body's own tissues. Because of this, fluid builds up in the joints causing pain and inflammation throughout the body. Courtney is now an active 10-year-old who lives in Randolph with her parents, Bill and Kim, and older brothers, Collin and Conner.

"It started with a swollen knee, which we chalked up to a fall from just learning how to walk," Kim explained. "We started with our family practitioner who advised us if the swelling didn't go down within a month to follow-up with an orthopedic doctor. We had several visits with them before she was officially diagnosed."

The diagnosis came through x-rays, blood work and consultation with the orthopedic doctors. Kim found the statistics from the Arthritis Foundation interesting that state Juvenile Arthritis affects approximately one child in every 1,000 in a given year. The condition may be more common than is expected.

"Courtney takes medication and for her it started with physical therapy also," Kim said. "Due to the swelling in the knee, that leg would typically grow faster than the other. So the leg that was longer she wasn't straighten it and it became tight. Normal things like stair climbing and other activities were difficult for her."

Doctor appointments vary from every three to six months, depending on how she is feeling. Since JRA can affect the eyes very quickly, she also sees an eye doctor on a regular basis. Courtney also experiences a flare-up about once a year, but otherwise the family considers themselves very lucky in keeping the arthritis under control.

Kim is an Occupational Therapist and commented about her choice of careers, "You wonder sometimes why you pick a career and I think this was God's answer to help take care of her and be on top of things. It's definitely been helpful because I can help manage her disease and do the exercises and am probably more in tune to oncoming flare-ups."

Courtney will be starting fifth grade at Randolph Elementary School this new school year and said that there have not been many questions from friends about her JRA because she can pretty much keep up with the other students. Occasionally she may miss a gym class because of a flare-up, but for the most part, exercise and activity is good for her wellbeing.

Being so active, Courtney said her favorite part of school is recess, but she is looking forward to more math as a fifth-grader. She enjoys many hours swimming and is on the swim team in Randolph; she also plays basketball with her dad as the coach, and enjoys biking.

"The key is moderation," Kim said. "No exercise is not good, but we have to make sure we keep her exercise at a moderate level to help prevent flare-ups. Sometimes we have to slow her down because she's such a go-getter."

Unfortunately, there is no cure for JRA, the goal is mainly to control pain, relieve inflammation and improve a child's quality of life. For Courtney, her goal is to just be a regular kid Ð have fun, hang out with friends, and enjoy every minute of summer vacation. One memory that stands out for Courtney and her family as an illustration of this goal is the mile run at school.

"She was having a flare-up and she was distraught that she couldn't participate like everyone else," Kim said. "She was going to walk the mile with her teacher, but ended up having a doctor's appointment and missed it. For her it was big; she wanted to run it like everyone else. For the most part she doesn't let this slow her down, she stays busy and active Ð we're very fortunate."

While Courtney may not have completed that mile run, she is already miles ahead in her courage and determination in facing life and the many challenges and adventures that await.

Anna Schmidt, a 14-year-old from Horicon, faced a fight for her life just two years ago. After being plagued with stomach pains, a cough and breathing difficulties, Anna was sent to Children's Hospital in Milwaukee. Her family, parents Brian and Jean, brother Austin and older siblings Jaclyn and Matthew, were told Anna's heart was failing. She was diagnosed with cardiomyopathy Ð an enlarged heart caused by a virus.

Anna spent Christmas and New Year's Day of 2009/2010 in the hospital. At first, medication was working, but each time the doctors tried weaning her off the medicine, her heart would weaken. Anna and her family were told she would need a heart transplant. During the waiting process, Anna was put on the Berlin heart pump, a pediatric device manufactured in Germany that helps a child's failing heart pump blood while a donor heart is located. While this device buys time, it also has risks, including blood clots. Anna suffered a severe stroke and needed brain surgery to relieve the pressure off her brain. After over 100 days in the hospital, Anna's parents received the call that a heart was available and she went into surgery during the night of March 29.

"Her recovery was rapid," said Brian. "She was eating within two days of the surgery and her speech started to return. They expected she would be in the hospital for a long time after the transplant because of all the issues she had, but she was out in two and a half weeks, which was remarkable."

She came home with a walker and wheelchair, but quickly tossed those aside. Anna finished her eighth grade year at St. Stephen's in Horicon as salutatorian and also played basketball and volleyball during the season. She still has some lingering effects of the stroke in her right hand, but Anna continues physical therapy to work through this challenge.

"The outpouring of support for us was incredible," Brian said. "Austin stayed here and continued going to school, and people helped make sure he had food and got to school. He did a great job of being on his own. When we came home, there were welcome back signs all over the community and fundraisers Ð the support was amazing. There are advantages of living in a small town."

Anna was happy to get back to school and see her friends again after her ordeal in the hospital. She had talked to her friends on the phone during her time away from school, so they had a pretty good idea of what had happened, and Anna said there weren't a lot of questions once she returned to school.

"My doctor didn't say that I couldn't do anything," Anna said. "I like to think of myself as normal and wanted to be treated like that. I like to bake and cook and hang out with my friends. I like to be around people, I get lonely otherwise."

Anna also loves her dog Max, who came to visit her in the hospital and cheered her up. Another love is the Green Bay Packers, and Anna was granted her wish to meet the Packers from the Make-A-Wish Foundation. Last August the Schmidt family spent several days in Green Bay as guests of the Green Bay Packers. It was a great experience for Anna, and ESPN covered the event as part of their "My Wish" series.

"The biggest thing was to never give up and to keep hope," Brian said. "Our Christian faith is important to us and we really needed to hang on to that during this time."

Anna will start this new school year as a freshman at Horicon High School. She said that she is a "little nervous" about starting high school, but looking forward to her favorite subjects of spelling and art. These are ordinary emotions for a very extraordinary young woman. Anna just wants to be accepted and welcomed into the group of incoming freshmen this new school year Ð and isn't that acceptance something desired by all?

Rebecca Surita was diagnosed at the age of 16 with aplastic anemia, a blood disorder in which the body's bone marrow doesn't make enough new blood cells. Becca's mom, Patti, who is a Registered Nurse, explained that doctors believe her daughter's disorder was caused when she caught a virus.

"Her immune system went to fight it and kind of went into hyper-drive," Patti said. "It never shut off after the virus and started attacking the body."

With aplastic anemia the body doesn't make enough red blood cells, white blood cells, and platelets. This is because the bone marrow's stem cells are damaged.

Now 19-years-old, Becca is a college student and lives on campus during the school year. At first, the Surita family, who live in Mayville, were thrown into a whirlwind of doctor visits. Becca explained that she was seeing a doctor every few weeks, now she is at once a month visits. Becca was diagnosed at the beginning of her junior year of high school and was hospitalized over finals week.

"I think the biggest effect for her was the athletics," Patti said. "She had participated in three sports for years and then suddenly she couldn't participate in basketball and soccer for one season."

As Patti explained, with some children's illnesses there are obvious outer signs, but with Becca's case, not many people outside of the family knew she was sick.

"Our philosophy was to let her live and do what she could as a young adult and teenager," Patti said. "Let people treat her as if she was normal Ð so we didn't tell a lot of people and many said they didn't realize she was sick. Which was good, but was also negative when people would ask why she wasn't going out for sports or why she missed half a day of school."

Becca said it was difficult to explain her medical condition to friends, mainly because the blood disorder itself is so difficult to explain to other people. Her friends were very supportive though, they brought her care packages and were understanding that there were some things she just could not do.

"It's helpful for friends to just be there for support and try to understand the situation as much as you can," Becca said. "My friends were great; they were always there if I needed to talk. Now in college, I kind of choose who I share my story with, not everybody needs to know."

In January of 2010, Becca's senior year, she was granted a trip to Hawaii through the Make-A-Wish Foundation. Her best memory is swimming with the dolphins. She chose Hawaii because she had never been to the ocean before and thought it would be some place she might not ever see otherwise.

As a way to give back to the Make-A-Wish Foundation, Patti organized a golf outing in Mayville this summer. This event was also a way to connect with other families in the area and share an opportunity for support and to share their struggles.

"It was a scary time," Patti said. "They were talking bone marrow transplant for her. She was 16 and thinking of being in the hospital and maybe not graduating with your class because you would be in the hospital for at least six months."

After her high school graduation, Becca started in the nursing program at Marian University. While she had decided to pursue nursing before her illness, because of her own experience she will focus on pediatric nursing. Going off to college presents its own set of challenges for both Becca and her mom.

"That whole independence thing is huge," Patti said. "When Becca said she was going to stay on campus, I wondered if that was a wise idea. I used to set up her pillboxes and I could peek in there and know that she took them, now I have to be OK with that. We had that conversation, she's an adult and you hope that you've done enough to give them that responsibility. It's a fine line Ð you want them to be responsible for their health, but you don't want their health dictating everything they do."

With Becca's personal experience, she hopes to use not only her nursing education, but her health challenges as a way to connect with children in similar situations. Her personal courage and determination will prove to be an inspiration to others.