Project Two Final Draft: Dance Marathon at Florida State University

Dance Marathon at Florida State University is a student run philanthropy where students are awake and on their feet for 20 hours to raise money and awareness for our local Children’s Miracle Network Hospital, Shands Children’s Hospital in Gainesville, FL, and FSU’s College of Medicine Pediatric Outreach Programs. For the past 21 years, Dance Marathon has been a Florida State tradition that has raised nearly $8 million for Shands Children’s Hospital and Pediatric Outreach Programs through FSU’s College of Medicine. This past year Dance Marathon set a goal of 1.7 million dollars and we were able to raise $1,830,167.28 dollars for the kids. The weekend of February 20-26 a total of 29 programs hosted their individual Dance Marathons and raise a grand total of $4,760,940.90, the highest fundraising weekend in the Children’s Miracle Network Dance Marathon history.

Everyone has a different reason for participating in Dance Marathon. Mine is being able to help continue to help provide medical care, treatment, and research in order to make these NICU babies recovery process easier. The NICU and its babies have a special place in my heart because I was a NICU baby. These machines saved my life, and its indescribable to know just by fundraising and raising awareness, I can potentially save their lives.

Over the past few years, the money raised from Dance Marathon has also allowed for Tallahassee Memorial Hospital to open a much needed NICU. NICU stands for Neonatal Intensive Care Unit which helps take care of babies in critical conditions such as prematurity. NICUs make the biggest impact on the babies’ life. This NICU is the only one within 170 miles with the necessary medical equipment such as a neonatal crib, an Infusion Pump and an Infant CPAP machine that has the ability to save the infants lives. “A CPAP machine, which is a continuous positive airway pressure, is another piece of equipment to help (infants) breathe. It gently inflates (the infant’s) lungs and keeps them open. Air goes in through a mask or a tube in (the infant’s) nose,” (BabyCentre Medical Advisory Board). The Infant CPAP machines are used to deliver oxygen to the 20-25% of all neonatal patients who are affected by respiratory diseases; however, they can cost up to $10,000. An infusion pump is “…a medical device that delivers fluids, such as nutrients and medications, into a patient's body in controlled amounts,” (Center for Devices and Radiological Health). These pumps can cost anywhere between $2,380 to $5,982.

Since it was founded in 1983, Children’s Miracle Network Hospitals various fundraising partners and programs have raised more than $5 billion dollars in order to support the nonprofit’s mission to save and improve the lives of as many children as possible. The Children’s Miracle Network are comprised of 170 member hospitals that provide 32 million treatments each year to kids across North America. Not only do they provide the necessary treatment and care to those who are suffering from common childhood afflictions such as asthma and broken bones or are fighting bigger challenges such as birth defects or cancer, the Children’s Miracle Network Hospitals also educate families about issues like child safety seats, helmet safety and bicycle safety. The University of Florida Health Shands Children’s Hospital is the participating Children’s Miracle Network Hospital for the Gainesville/North Central Florida, Tallahassee/South Georgia and West Palm Beach areas. Cancer is the chief cause of death by disease in children under 15; however, thanks to Children’s Miracle Network Hospitals and Dance Marathon, almost 80% of children with cancer will survive today due to advances in diagnosis and treatment of pediatric cancer, (UF Health Shands Children's Hospital).

This past January, I had the incredible opportunity to visit Shands to actually see the impact I have helped make by fundraising. The money raised could go to things such as Nurse's stations or an entire unit for children who had compromised immune systems, post Chemo and any other little or big thing in between hospital beds, NICU equipment, or even just things to keep kids happy and entertained during their stay. The Development Associate of the University of Florida Health Shands Children’s Miracle Network Hospital, Lindsay Ritenbaugh was my tour guide at Shands Children’s Hospital in January. Before I participated in the marathon, I asked Lindsay at if she minded sharing a memorable experience she has had over the course of her involvement with Dance Marathon and/or at Shands Children’s hospital, she responded with… “I knew I was joining a Children’s Miracle Network with three top ten fundraising programs nationally, but seeing over $663,000 collected in 48 hours was breathtaking. Knowing the lifesaving equipment that will be purchased for the kids at Shands and the transformative research that will be conducted at our respective College of Medicines brought literal tears to my eyes. It was at that moment where I realized that together we can do more for the kids at UF Health Shands Children’s Hospital and that Dance Marathon brings together even the biggest of rivals for a shared cause,” (Ritenbaugh).

Florida State University held their 22nd annual Dance Marathon February 24th-26th, 2017. The marathon was a total of 40 hours broken up into two 20 hours shifts, the Garnet Shift on starting Friday afternoon and the Gold Shift starting Saturday afternoon. I participated in the Garnet Shift. We were told to arrive at the Civic Center at 5:15 for our 5:30 check in. The Opening ceremony started around 6:30 and at 7:00 over 1,000 dancers stood up starting our 20-hour countdown. There are five different levels of involvement. Dancers, Delegates, Captains Core and Management and Executive Board. I was a dancer. During our designated shift, the dancers were encouraged to learn the line dance, enjoy live entertainment, eat great sponsored food, and get to know the miracle families that are directly impacted by Dance Marathon. Dance Marathon is a big supporter in ensuring the families who benefit from these programs are present during the event, especially families with miracle children. Miracle Children is any child who has received treatment or care at a Children’s Miracle Network Hospital. The Miracle Children are the future, and their future relies on a yearlong effort of fundraising.

It was a strenuous 20 hours due to the fact we not only had to stand the entire time, but also every hour, on the hour, we would perform an 8-minute choreographed line dance taught by some of the members of CORE. I wanted to maintain an optimistic attitude and not complain, not once over the 20 hours. That became very difficult since negativity can be just as contagious as positivity. One thing that helped me maintain my positive attitude was once we had performed the line dance each hour, we were allowed to take a knee and listened to a different miracle family that benefits from the funds raised by Dance Marathon FSU tell their story. During the hours of 12am to 7am, we watched a prerecorded video of a miracle family that benefits from different Dance Marathons form across the country. Anytime I felt negativity begin to have an impact on me, I would think back to the families on stage. I would remember the temporary and discomfort I was experiencing at the time is not even comparable to what these miracle families and children had to go through and in some cases will continue to go through indefinitely. There were three of the miracle children who stood out to me the most: Nate, Parker, and Grayson.

At the end of the second hour, the sirens echoed through the speakers signaling the top of the third hour. We got into our positions as the line dance music began. After 8 minutes of my coordination failing me, the line dance ended and everyone took a knee. A family of five walked on stage. Leading the way was Nate. If it weren’t for his oxygen mask, you would have no idea that without Shands and Dance Marathon, Nate wouldn’t have made it to nine because he had the biggest grin on his face. Nate has been a patient at Shands since birth because was born with a genetic condition called Mitochondrial Disease. Mitochondrial Disease is a genetic disorder when Mitochondria cells are defective, the unused oxygen and fuel molecules build up in the cells results in organ dysfunction (Mito FAQ. Nate has 9 pediatric specialists at Shands who ensure that Nate can live a fairly normal life despite having to heavily rely on medical equipment and medications to keep his body functioning properly (Miracle Families). Regardless of his circumstances, Nate has proven his condition doesn’t stop him from being full of energy and a joyful kid. Nate is at an age where he understands Dance Marathon isn’t just a giant party where he can hang out with a bunch of college kids, and he was very verbal of his gratitude while on stage.

When the sirens sounded to begin the line dance at hour five, my attention was immediately directed to the stage. With practice my line dancing capabilities had improved slightly, so when I took a knee to listen to the last miracle family speak for the next few hours I was much more aware of what was going on around me. I began to notice a couple of the dancers were beginning to lose their enthusiasm I first saw during hour one. I also noticed how much happier I was at the top of each hour while I was listening to each of the families tell their stories. My thoughts were intersected by “This is incredible!” The miracle family had made their way to the stage, and Parker, one of the better known miracle children, began to speak. At the age of three, Parker was diagnosed with Myelodysplastic Syndrome. Myelodysplastic Syndrome (MDS) is… “a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. The bone marrow functions as a factory that manufactures three kinds of blood cells: red blood cells, white blood cells, and platelets. Healthy bone marrow produces immature blood cells that normally develop into mature, fully functional red blood cells, white blood cells, and platelets. In MDS, these stem cells may not mature and may accumulate in the bone marrow or they may have a shortened life span, resulting in fewer than normal mature blood cells in the circulation,” (Understanding Myelodysplastic Syndromes (MDS)). MDS is a precursor to leukemia. Parker was sent to Shands Hospital where he went through high dose chemotherapy and total body radiation in preparation for a Bone Marrow Transplant using new cord blood. After 28 radiation treatments and 14 days of high dose chemo, he had a bone marrow transplant at Shands Hospital in Gainesville. Since it was a relatively new procedure, he was only the twentieth case using new cord blood in 2002 and in total cost approximately $20,000. The Children’s Miracle Network and money raised by Dance Marathon were able to cover all treatments, and therefore Parker was never diagnosed with leukemia. (Miracle Families). Today, Parker is in his 14th year of remission, and has been an FSU miracle child for 15 years Parkers outlook on the impact Dance Marathon has on those who are not directly impacted by the hardships of being a miracle family gave me a new perspective on the longer-term benefits of participating in Dance Marathon. He said, “The students in the marathon have a big impact because they are very young people just knowing that they have this impact on life- when they see the miracle balloon at Walmart or at a store and the think, ‘I made that and I made a purpose for either Parker or another miracle child.’ It has a really long lasting effect on themselves as well. Every year when we know the date of FSU’s Dance Marathon we circle it and make sure that nothing will interfere with that weekend, it’s my favorite weekend of the year. (Parker Fox).

My coordination had improved over the course of 19 hours because when the siren sounded marking the final hour and final line dance, I had no difficulty executing the 8-minute dance. Once the dance was over, instead of taking a knee in the middle of the dance floor like we had done the previous 19 time, we were told to stand a circle around the perimeter of the civic center basement while the final miracle family stood in the middle. I was aware the temporary and discomfort I was experiencing at the time is not even comparable to what these miracle families and children had to go through and in some cases will continue to go through indefinitely; however, the closer I got to hour 20, the more difficult it became for me to remaining positive because regardless of how optimistic a person I am, I am still human. This led to me having slightly less of a positive attitude than I had at the start of each of the pervious 18 hours. That was until Grayson’s Mother, Janelle Irwin, showered us with gratitude. Looking back Grayson’s story isn’t significantly different than any of the other miracle children’s, and all of the other miracle families were just as grateful. Grayson was only 11 months old when he was diagnosed with Infant T-Cell Acute Lymphoblastic Leukemia, which is a cancer of the blood and bone marrow where the bone marrow makes too many immature lymphocytes (a type of white blood cell), (National Cancer Institute). When this happens infants have too many immature white blood cells in their bone marrow. These cells crowd out normal white blood cells. Without enough normal white blood cells, the body has a harder time fighting infections. It can spread from bone marrow throughout the body to other organs, (Acute Lymphoblastic Leukemia). He was given a 10% survival rate. Now, Grayson is four years old, and was able to celebrate one-year cancer free in August of 2016, (Miracle Families).

It was likely a mixture of sleep deprivation, muscle exhaustion, and anticipation of being able to sit for the first time in 20 hours, but the way Janelle Irwin thanked us when she was telling Grayson’s story turned my unenthusiastic attitude to appreciativeness.“The sounds of the machines you dread, but the lifesaving medication its providing your infant son is humbling. Doctors, nurses, child life specialists, researchers, volunteers, and therapists, filter in and out of the room on a rotating basis throughout the day, reminding you that even amidst the most daunting of enemies, an army stand on your side, and behind that army stand funding, and resources making even statistics and prognosis’s quiver in fear. Thank you for the equipment that is saving my son’s life, one medication at a time, a thank you for the researchers devoting their lives to finding a cure. A thank you to the staff and personnel that offer a simple ‘can I get you anything’ to go along with caring for my little boy. A thank you for the hospital walls that surround us, and the comfort knowing we are in the right place receiving the best treatment possible, and a thank you to the Children’s Miracle Network who nods in agreement with my son and says ‘not today sweet momma, cancer doesn’t stand a chance.’ Research is coming a long way and Grayson is living proof of that,” Janelle said. “I am so thankful for Children’s Miracle Network for playing such a huge role in allowing me to be able to celebrate my son’s birthday,” (Janelle Irwin).

It has been proven that smiling can boost a person’s mood, and even their immune system and they say laughter is the best medicine. “Smiling is evolutionarily contagious and we have a subconscious innate drive to smile when we see one,” (Savitz). Evolutionary theorist, Charles Darwin, developed the Facial Feedback Response Theory, which suggests that… “the act of smiling actually makes us feel better (rather than smiling being merely a result of feeling good). Smiling has documented therapeutic effects, and has been associated with: reduced levels the stress hormones of cortisol, adrenaline, and dopamine, increased health and mood enhancing hormone levels such as endorphins, and lowered blood pressure,” (Savitz). Vietnamese Buddhist monk, teacher, author, poet and peace activist Thích Nhất Hạnh once said “Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy” (Schulman). It can be hard for families to be joyful or even smile when their children are fighting for their lives, and have to mature quickly because they are faced with pain and suffering. Childhood should be a time of innocence, curiosity, and joy. I stood for 20 hours to give the Miracle Children and their families the hope that they will once have those moments of pure bliss without worrying about their child’s health. No child or family should have to worry about getting the help they need. Dance Marathon at FSU is a movement that embodies the hope of future generations to live long and healthy lives. Dance Marathon at FSU believes in helping children fight their battle today in order to see a healthier tomorrow. One donation, no matter the size, has the potential to make such a tremendous impact on the future of a child’s health. Knowing that all the efforts put towards Dance Marathon is 100% worth it, and that I am capable of making a difference in the lives of not just the sweet kids, but anyone who benefits from Dance Marathon really warms my heart. No child should stand alone: I stand for those who can’t.