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Miracle Families
Dance Marathon at FSU works year-round to raise funds and awareness for these incredible kids! Their inspiring stories prove that our work can help make a difference in the lives of those who need it.
Alyssa
Alyssa was born at 26 weeks weighing only 1lb 4 oz and developed Cerebral Palsy and Hydrocephalus secondary to prematurity. Alyssa is now 27 and has been involved with Dance Marathon for 25 years. She loves dancing at the marathon with everyone!
Bailey
Bailey Abbott was born with Turner syndrome, a rare chromosome disorder that occurs when a female child is missing an X chromosome. From the moment Bailey was born, she was already a true miracle! Turner syndrome can cause conditions that include heart and kidney defects, hearing or eyesight problems, short stature, swollen hands and feet, scoliosis, learning disabilities and even infertility. When Bailey was just 2 weeks old, she received heart surgery to correct a birth defect on her aorta, a common problem for girls born with her condition. Bailey visits the UF Health Turner Syndrome Clinic every four months, where she is seen by many specialists, including endocrinologists to monitor her growth, cardiologists for an electrocardiogram and other tests and psychologists for education consults and dentists as needed. Because girls with Turner syndrome often have problems with short stature, Bailey started daily injections of growth hormones when she was 2 and will continue to receive them until puberty. Bailey was also born with only one kidney, which is monitored closely by her nephrology team at UF Health. When Bailey was born, her parents were stunned by the diagnosis, having never heard of Turner syndrome before, and could only find scant information on the internet. The family was referred to UF Health Shands Children’s Hospital because of the breadth of care available from the Turner syndrome specialists. Without the incredible care available at UF Health Shands Children’s Hospital, Bailey’s family says they do not know where they would be today. People quickly learn that Bailey is just an active 14 year old that is not defined by her diagnosis. She has a bright, bubbly personality that touches lives everywhere she goes.
Beckett
Beckett Genuardi was born on October 12, 2014. Once he came home, his parents always worried about his breathing. On December 22, 2014, his parents brought him to the ER thinking he had a minor infection. Their local hospital quickly admitted him and soon after he went into respiratory distress. He was diagnosed with dilated cardiomyopathy. On Christmas Eve, he was transferred to UF Health Shands Children’s Hospital. Beckett received the Berlin heart on January 5, 2015 and received a heart transplant only 10 days later. Beckett is now a happy 8 year old and loves spending time with his sweet sisters Harper and Danny.
Caden
Caden and his family’s journey with Children’s Miracle Network and Dance Marathon began when Caden was just four weeks old. At four weeks, Caden was diagnosed with Hemophilia A, which means that if Caden fell or got a cut, unlike our bodies, Caden’s body isn’t able to produce a fibrin clot and stop the bleeding. November 2017 brought a lot of changes for the Buth family, as Caden stopped taking his immune suppression drugs and a new weekly subcutaneous Hemophilia therapy was approved by the FDA. Caden’s family is happy and ecstatic to report Caden hasn’t experienced a single bleed and his quality of life has increased by leaps and bounds. No more missed school or play dates, no more worrying if he falls or plays outside too much. Although Caden’s treatment is still regulated by various specialists at Shands, many of the complications Caden and his family once endured has been alleviated as a result of the funds raised by DM at FSU.
Elie
At 6 years old, Elie Chapman was brought to the Shands ER after severe abdominal pain. After multiple tests, inconclusive findings, and nights at the hospital, she was diagnosed with Glycogen Storage Disease which is a rare condition where the body has an enzyme deficiency that prevents it from converting glycogen into glucose for energy.
Marshal
Cancer. All of us have someone in our circle who has felt its impact. I’ve lost friends and family from it. We all have. My own parents currently each have a diagnosis. I’ve even had my very own “scares” and threats like so many others. But, a little over a year ago, I lost my son. My 17- year old, 3 months short of 18 years old, son. I said goodbye to him after a 4- year fight with osteosarcoma, bone cancer. I remember our first trip to Shands Hospital in Gainesville. My son was devastated. But, he was even more devastated to find, once there, that even a “baby” could have cancer. It floored him. It made him cry. The cruel reality that children, yes, even babies, are diagnosed with this horrible disease, and worse…. some even die because of it, floored my boy. My son and I had barely become a “forever family” in 2013, when we turned around in the spring of the very next year to discover, through a fall off a bike, this diagnosis of osteosarcoma. We were just into our second year together – getting to know one another through mentoring, fostering and eventually adoption. And suddenly , our tiny family of two would be tested as we never could’ve imagined. With years of abandonment, abuse and neglect behind him, my son moved into the world of well-intentioned placements and transitions , over 10 of them, before we found one another here in Leon county and became a family. This 13 -year old boy who carried with him issues of trust, and attachment, and anxiety, now was told he’d also be carrying along cancer. He could barely withstand the feel of the tightening blood pressure cuff and now he’d be asked to withstand chemotherapy,..lots of it. There were sudden and unexpected middle of the night ambulance transports from Tallahassee to Gainesville, and the more routine clinic visits here at TMH to get used to. Then the change and loss grew bigger still, as my son bravely decided to have his right leg amputated in hopes of eliminating the cancer altogether. Within a year of our adoption ceremony in that courthouse, my son had 7-8 weeks of chemo and an above knee amputation of his right leg, not to mention all of the change that accompanies limb loss – i.e., learning to transition to wheelchair, phantom limb sensations and physical therapy to learn to use a prosthetic leg. Our story of childhood cancer followed on through the next wonderful year as my son was declared to be “cancer free.”We made a Make a Wish trip to NYC, traveled to the beach with family. He learned to use a prosthetic leg. He even went back to school and I went back to work as a teacher. Then almost a year to the day of the “relief,” came the “gut kick,” and ensuing uncertainties of more cancer. It was back, and had metastasized to his lungs. For the next year, we traveled back and forth from Shands to home, and even to St. Jude Children’s hospital in Memphis. Some mets/ tumors in the lungs were removed surgically, some we tried to shrink through more chemo or meds, and another new one in his left leg through radiation. Finally though, there proved to be one tiny nodule too close to both lung and heart to remove. This last nodule seemed to have my son’s number. After exhausting all options that were feasible at the time, my son made another braver than brave decision – stop the chemo and trials and just go home and ‘live” for awhile. May of 2018 , my beautiful, amazing son died here in his hometown with his Mom at his side
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Nate
Nate was born with a genetic condition called Mitochondrial Disease, a multi-systemic disease resulting in organ dysfunction, Nate has been a patient of UF Health Shands Children's Hospital since his birth. His 9 pediatric specialists at Shands ensure that Nate can live a fairly normal life despite relying heavily on medical equipment and medications to keep his body functioning properly. Because of his amazing medical team and donations to Children's Miracle Network Hospitals, Nate is an energetic and joyful kid who loves attending school, playing the violin, and hanging out with his Dance Marathon at FSU friends! He also enjoys watching college football!
Cason
Cason is 17 years old and participates in Dance Marathon to raise awareness & funds in honor of his sister Kirstyn who passed away from complications of Propionic Acidemia. After Kirtyn passed, Cason was diagnosed with PTSD and depression. He is treated through his primary care doctor and therapist at Shands but stands as a representative for his sister more than anything.
Fletcher
Fletcher was diagnosed with Burkitt’s Lymphoma, an extremely aggressive cancer that has the potential to double in cell count in only 24 hours. Fletcher went from being happy and running around with his sister and friends to being in the PICU on a breathing tube and dialysis in a span of one week. Thanks in part to fundraisers, like Dance Marathon, Shands was able to provide Fletcher with the innovative and comprehensive care that he needed. Dance Marathon raises millions of dollars per year which allows Shands and other Network hospitals to purchase state-of-the-art medical equipment and provides many other enhancements for Fletcher and the more than 8,500 other pediatric patients at Shands. These enhancements not only make their stays in the hospital more comfortable, it also increases their chances of survival. Little by little, hour by hour, day by day, he began to get better. Fletcher has a future now, he’ll be going to 5th grade, he’s playing with friends again, and, although those are very common things for a kid his age, it could have easily not happened for him. Fletcher completed his last round of chemo on July 23, 2017, and has been cancer free since!
Mazzy
Mazzy Jester was diagnosed with cancer when she was 11 years old. When a trip to the emergency room showed numerous tumors in her abdomen, Mazzy and her family were introduced to a pediatric oncologist who told them Mazzy needed a biopsy. Mazzy was diagnosed with Hodgkin’s lymphoma. Her prognosis was good, but she would need to start chemotherapy right away. Mazzy was just starting middle school and was allowed to go to school for a few days before she was readmitted to the hospital for a number of tests and surgeries. The chemotherapy was administered through a port in her heart. She missed most of 6th grade as she was in and out of the hospital going through chemotherapy and working through the aftermath. She responded well to the treatment but never liked the long stays in the hospital. Thankfully, the programs and volunteers always helped make the time go by. Today, Mazzy is a healthy 19 year old whose huge heart and beautiful smile reminds us what a miracle is every day!
Nicole
Hello, my name is Nicole Myer and I am a brain cancer survivor! I was just starting my 6th grade year when my cancer was discovered. It all started out with bad and annoying headaches that never really went away. The morning of September 29th, 2015 I endured the worst possible headache that I’ve ever known. I lost all balance and had to basically be carried to the school clinic. Tears ran down my face as I realized that this was NOT just a headache. My mom came in a few minutes later and wheelchaired me out of the clinic. Moments later they returned with the results, telling my family and I that a tumor was shown on the scan that required immediate attention. They then set us up with an ambulance that took us to Shands Children’s Hospital in Gainesville Florida. They removed the tumor the next morning and my pastor was there with my family and I. After surgery, I awoke in a room full of sad people who told me of my diagnosis. My pastor then prayed with me and left so that I could have some time with my family. The doctor then came into my room and asked if I would like him to speak with my parents outside of the room or if I would like to be included in the conversation. From that moment on I’ve decided to be included in every conversation about my health. Over the next few days I had visitors from my town and school who brought things to comfort me. On the day of my release from the hospital I attended our local middle school football game! Since the discovery of my illness, I have undergone a total of 9-10 surgeries, 9 blood transfusions, and 1 platelet transfusion. I have had to learn how to walk and to use my hands all over again. I have had multiple days of time spent in the hospital, I have made new friends from all over the world, and I have gained a deeper appreciation for the world around me, family members, and friends. My oncologist, Doctor G., has been very helpful in the process of my health, being available 24/7 and helping in all ways he has possible. Dance Marathon at FSU has been the greatest support of not only me, but all kids like me. There was never a dull moment at DMFSU! All the joy and support of this organization has given me a deeper love for this world, showing me that there is hope for everyone. I have met so many great people throughout DMFSU! I am proud to be a part of a great movement, and I can’t wait for what successes come in the future!
Dani-Lynn
Dani-Lynn was born on May 5th, 2015. At 8 days old, she was wheeled into her first surgery. After spending 5 weeks in the hospital, she was sent home. The months that followed were rough. After months of visits to the ER with no answers, in December of 2015, Dani-Lynn was taken to UF Health Shands Children Hospital. Dani-Lynn has Congenital Heart Disease – 3 defects. She has Hypoplastic Left Heart Syndrome, Ventricular Septal Defect, and Partially Anomalous Pulmonary Return. Dani-Lynn has had 3 open heart surgeries and 3 heart catheters, and she is currently on the heart transplant list as a level 2 candidate.
Lauren
On August 29, 2013, 8-year-old Lauren and her family received the heartbreaking news that a tumor found on Lauren's knee was cancer. Lauren was diagnosed with osteosarcoma and began chemotherapy immediately at Shands Children’s Hospital. Though Lauren and her family were devastated to learn of the cancer, they knew that the doctors and nurses at Shands would do everything to ensure that Lauren got the best treatment. The road for Lauren has not been easy. When it was found that the cancer went further down her leg than originally anticipated, surgery was the only option. Lauren underwent rotoplasty surgery and was fitted for a prosthesis for her right leg. The chemo treatment was brutal, but Lauren remained tough as always and proved she would come out strong. Shands became a second home for Lauren and her family. She has been in remission for 10 years! She is now starting her freshman year at UF and is the CMN Champion of the Year!
Nakia
Nakia has a brain condition called Holoprosencephaly (HPE) which develops early during pregnancy. Due to her condition, Nakia’s forebrain did not fully develop. She has had both her right and left legs amputated which was a hard decision for the Watson family but ultimately has given her a better quality of life. Her family’s nickname for her is ‘Sunflower’ because she radiates light and positivity.
Powie
Powie is a happy, go-lucky 12-year-old who was born with a genetic disorder called Mitochondrial Disease. As we all know, the mitochondria is the powerhouse of the cell - but in Powie’s body, her cells aren’t capable of supplying enough energy for normal organ function. At two and half years old, Powie was officially diagnosed and soon after, she began treatment. Since then, her life has consisted of hospital stays, surgeries, and therapy appointments.
Register a Family
Want to get involved with Dance Marathon at Florida State University? Have you been affected by the Children's Miracle Network? Register to be a Miracle Family today! Contact our Family Relations Chair at dmfsu.familyrelations@gmail.com.