Meet the Kids

When Alison was 22 months old, she fell two stories out of a window and fractured her skull. She was rushed to the hospital where she had emergency brain surgery. Her parents were told that she might not make it through then night and she was put into a medically induced coma. When she awoke, they found more complications in her brain and had to perform another surgery. After a long recovery process, Alison made a full recovery and is an active 12 year old.

Alyssa was born 3 1/2 months early (26 weeks) and weighed only 1 pound 4 ounces. this was 16 years ago. We were told she would not make it through the first night. After 3 months in the hospital she went home. In less than 2 weeks she was back in the hospital....failure to thrive. She could not eat and keep it down. At 2 months a G-tube was placed. Hydracephalus then came into play and at 3 months old had her first shunt placed to drain excessive cerebralspinal fluid from the brain.. Since then she has battled shunt malfunctions and episodes where her stomach just stops working.. These along with shunt infections , have resulted in MANY hospitalizations which vary from 2 or 3 days to 10 months. She has spent more than half of her life in the hospital. While she also has other challenges such as deafness, cerebral palsy, gastric reflux, and delayed speech, ’she is always smiling.. You only need to send a minute with her to realize how special she is.

We were referred to Shands from Arnold Palmer Hospital in Dec. 2012. We had testing for a possible heart transplant in Feb. 2013. AnnaRose got sick on June 2nd. We took her to Arnold Palmer and then she was transported to Shands a couple cays later. She was in heart failure. We stayed there until March 28, 2014. Anna loves the volunteers at the hospital. Some of the best are from Dance Marathon and that is where we heard about this. AnnaRose received her special gift on March 2, 2014. She calls her new heart Prince Toby even though we don’t know anything about her donor.

In Oct. 2010 Ava, 8 yrs old, had unexplained swollen lymph nodes in her neck. The right began swelling, then the left. I took her to the ENT doctors 2xs. They treated her with Prednisone, which is anti-leukemic and made her lymph nodes shrink. During the 2nd visit, the ENT scheduled a fine needle aspiration biopsy at Florida Hosp., which had inconclusive results. We were told we didn’t need a follow up appt. Her neck was almost normal for the entire month of November. The second week of Dec. brought the return of even larger lymph nodes. We returned to the ENT. He referred her to an Infectious Disease dr. That day, with great concern, I spoke w/ my friend Tami, who suggested I take her to UF Shands in Gainesville, FL. I got her an appt. with Dr. Collins, ENT @ UF Shands the next day. He sched. an open biospy for two days later, Dec. 23. We went to the biopsy w/ the expectation to get home in time for Christmas Eve service at church. That didn’t happen. At 11:30pm on Dec. 23, Dr. Collins and Dr. Dunbar (Pediatric Oncologist at UF Shands) woke me to give me the results, which was T-cell Lymphoblastic Lymphoma. She was moved immediately to the children’s Hem/Onc unit and a chest x-ray was taken (which showed no sign of cancer present in chest, lungs, abdomen, stomach, diaphram). Her central line infus-aport was surgically implanted the morning of Dec. 24th, along with first IT chemo and bone marrow aspiration. The spinal tap showed 6-7 blasts in her spinal fluid (central nervous system/CNS) and the bone marrow aspiration showed 8% blast of cancer cells. These two factors make her diagnosis high risk, stage 4 Non-Hodgkins T-Cell Lymphoblastic Lymphoma. (T-Cell ALL) Her first IV chemo treatment through her port was that night at 9:30pm. Christmas morning was awful. She was very sad and didn’t have much interest in what Santa brought. (I told her whenever we were able to go home we would have Christmas and Santa would come, and so he did, on Jan. 4) Things improved drastically when the rest of our family arrived. Noni came that day too. The next week was a whirlwind. It was full of confusion, fear, faith, love, and info. There are no words to describe it. She was a warrior from the first day. The doctors and nurses at Shands are exceptional. They treated her w/ respect and called her by name and looked her in the eye. This was all very important to her comfort and understanding of what was happening. Ava responded to treatment very well. Within the first 3-4 days we watched before our eyes her neck shrink back to normal. We were so happy and relieved. On the 8th day we rec’d the news that her spinal fluid was already clear and bone marrow was down to 4%. Day 29, the last day in her first phase of treatment showed NO detectable cancer cells in bone marrow! Praise God! This is the intended result for the first phase of treatment...to put leukemia/lymphoma patient in remission within the first month. Ava is God’s Little Warrior and has always had great Faith. She continues to shine through all of this. We knew from the very beg. that she was on a purposeful journey. Her treatment time is 2.5 yrs. Her prognosis is very good. We pray every single day for complete healing FOREVER.

In January 2013, Ayden came down with flu like symptoms. His mother treated him for his fever and cold symptoms. Early Friday morning of January 7, 2013, Ayden woke up early screaming that he didn’t feel well and was burning with a major fever. After his mother tried to cool him off in the shower, he just lay there screaming and convulsing for a few minutes. This ended up being a seizure one of many for that day. When he woke up he continued staring off, not talking and unresponsive. He could not walk and could barely talk so his mother took him to MRMC where he got a CT scan. The doctors said he had fluid on his brain and an ambulance took him taken to UF Health Shands Children’s Hospital. After an emergency MRI, the doctors discovered a large mass tumor connected to his central nervous system and cluster tumors in his optic pathways. Ayden immediately went into emergency brain surgery to place shunts in the outer cavity of his skull. This device drains the fluid out of his head and down into his stomach. After many surgeries and bouts of sickness, it in now in his heart. The doctors told Ayden’s mother that the tumor is cancerous, called "Pilocytic Astrocytoma with Optic Pathway Glioma.” The only option to give Ayden a change of living was chemotherapy. A year and a half later with several chemotherapy treatments Ayden is now completely blind from the pressure of the tumor on his brain and optic nerves. He walks around the house with his hands feeling his way around. His mother didn’t know that he was blind until he kept running into walls and falling. Ayden has undergone a total of 17 surgeries and is stable in the doctors’ eyes, which means the cancer is not growing or spreading but also not shrinking. Ayden and his mother had to learn Braille, learn to eat, write, get dressed and use the restroom, among other daily tasks most people do without thinking. The normal things in life we all do and he did, he had to re-learn. Ayden’s family is moving to St Augustine. He will attend the Florida Blind and Deaf School. Life changed completely for Ayden and his family after his diagnosis. Because of donations to Dance Marathon, he is receives top-quality care and treatment at UF Health Shands Children’s Hospital. Your donations go directly to help kids that need it, kids like Ayden.

Camden was born in June of 2011 with a severe form of congenital heart disease called Tetralogy of Fallot with Pulmonary Atresia, as well as DiGeorge Syndrome which is a chromosomal micro-deletion of his 22nd chromosome. Prior to Camden’s birth we did not know anything about this disease, and the only thing that having prior knowledge would have changed is which hospital Camden was born at. In Camden’s three and a half years he has endured two major open heart surgeries, two abdominal surgeries, three general surgeries, and five heart catheterizations. Prior to Camden’s birth, his Dad (Dustin) was a Senior Explosive Ordnance Disposal Technician (Bomb Squad) for the United States Army who has had three different deployments to Iraq. Camden’s Mom (Carrie) is a social worker by degree, but was working as a youth care worker for Eglin Air Force Base where Dustin was stationed. When Camden’s medical needs became too much for Carrie to handle by herself the decision was made for Dustin to get out of the Army. He got an honorable discharge, and we planned on moving back to Washington State where all of our family lives. Everything was packed, and on its way to Washington, but before we could make the trip Camden needed to have his second open heart surgery to “fix” his heart. Camden’s surgery went well, and the surgeon got to do everything he set out to repair while in the operating room. Despite surgery going well, recovery seemed rough for Camden; he failed extubation once, he had higher than normal right ventricular pressures, and a post-surgical infection (not related to the surgery). Eventually the day came when Camden’s team of doctors and nurses thought he was ready to be discharged and could make the long journey across the country with Washington State as the destination. The doctors mapped out which hospitals to take Camden to should the need arise, made sure we had all the necessary equipment in place for the trip as well as in Washington, and they made absolute sure that we were prepared for anything that could happen along the drive. We left armed with phone numbers, a GPS, and a plan. Little did we know just how important that planning would become before the planned end of our trip. The trip began like any normal cross country trip with an 18 month old child; lots of stopping, crying, and of course sightseeing. We took Camden to see the Grand Canyon and much to our luck, it snowed while we were there so Camden got to see the snow covered Grand Canyon. We then moved on to visit the Hoover Dam, drove past the Las Vegas Strip, and finished out the night eating dinner with friends at In-N-Out Burger where Camden got his first taste of the famous Double Double. The next morning (December 16, 2012) as we prepared to head north Camden had other plans. He developed a high fever so we took him to the local emergency room. Once there we quickly realized the staff was out of their comfort zone dealing with a child with such a severe disease, and requested transport to the Children’s Hospital of Orange County (CHOC). When the CHOC transport team arrived they confirmed that Camden was way worse than initially thought. The team immediately intubated Camden and while working to stabilize him he went into cardiac arrest. The doctors and nurses worked hard for about five minutes and finally revived Camden. Once stable the CHOC team began the 45 minute drive from the San Dimas ER to CHOC. When we got to CHOC they quickly rushed Camden up to the Cardiac ICU where the spent the next couple of hours getting lines placed to monitor various different vital signs. We finally got back to see Camden and were greeted by the nicest nurses and doctors you could ask for, but they all had a look in their eyes of sadness. That’s when the cardio thoracic surgeon dropped the bomb on us. She told us that Camden’s heart was in an advanced stage of heart failure and that he was not getting enough blood to his vital organs. She recommended placing Camden on ECMO (Extra Corporeal Membrane Oxygenation), which is one of the most advanced forms of life support available today. All of a sudden the sad looks were understood, our baby boy was going to die if we didn’t do this. This was the first time we were ever seriously told that we should be prepared for Camden to pass. Once Camden was safely on ECMO, we tried to get a tiny bit of rest; we had been resting for maybe an hour when we both suddenly woke up with a bad feeling in our gut. We walked over to the door into Camden’s room and saw about 20 different doctors and nurses all huddled around Camden’s bed. Suddenly it began, the monitor alarmed and the doctor immediately began doing chest compressions. Camden had gone into a potentially fatal heart arrhythmia called Ventricular Fibrillation. The CPR lasted for almost 30 minutes before they were able to get Camden back into a stable heart rhythm. About 6 hours after Camden’s V-Fib arrest we learned that Camden needed a heart and lung transplant. The transplant workup began with a trip out of the Cardiac ICU to get a CT scan. With Camden having arrested twice and being listed in critical condition his neurological status was unknown. With this CT scan we learned that Camden had suffered from a bilateral injury to his basal ganglia region of his brain. The basal ganglia region of the brain controls such things as movement, speech, and vision. With Camden’s neurological status remaining unknown all of the transplant centers within 500 miles refused to list Camden for transplant. Five days after being put on ECMO Camden developed a complication, an abdominal bleed. This type of complication required emergency surgery to be performed. This surgery was risky at best, and to make matters worse, it required Camden to be taken off of ECMO. This event became the second time that we were told to prepare ourselves for Camden to not survive. During surgery Camden required massive amounts of chemical resuscitation, but the smile on the doctors face when she came to tell us that Camden had pulled through and was recovering made it all better. For the rest of our lives we will always remember that smile, it was so genuine and warm that we knew for certain she was not lying, Camden had beaten the odds again and survived. We spent the better part of the next week having Camden’s case reviewed by different hospitals where we got the same answer from everyone, “we will take him as a patient, but not as a transplant candidate.” One day while talking to Camden’s heart surgeon in Florida he told us that we could always come back to FL where they knew him prior to this and could present a solid case for transplant to the transplant committee. So that was that, within two days of saying we wanted to go back to Shands hospital at the University of Florida Dustin was on a red eye flight to Gainesville, Camden was aboard the ShandsCair air ambulance, and Carrie and her dad were driving back across the country to Florida. Unfortunately for Camden, the transplant committee did not see eye to eye with his team of physicians, and Camden was denied listing for transplant. When we got back to Florida the reality of being homeless and jobless hit us like a ton of bricks. We began searching for jobs, and eventually a place to live. After many weeks of searching, Dustin finally found a job and began work. The next several months at Shands included lots of extensive rehab therapy, and with each day Camden was getting better and better. After spending 52 days intubated the most amazing sound in the world was hearing Camden cry again. You never realize just how much you take for granted with your children until it’s too late and you may never hear, or see something again. To some people hearing their child cry or scream is almost blood curdling, but to us, hearing Camden cry was like listening to a thousand angels singing. After 5 longs months, and many ups and downs, we got to take Camden home! Camden spent the rest of 2013 in and out of the hospital for many different things such as illness and surgery. In November of 2013 Carrie gave birth to our surprise baby boy. We named him Parker, after Camden’s favorite superhero Spiderman’s true identity. Camden and Parker quickly became the best of friends. Unfortunately in January of 2014 Camden became very sick from RSV. Camden was falling fast, and needed a lot of intervention and prayers ASAP. The next ten days were very hard for Camden, but he pulled through; however, when the doctors tried to extubate Camden his lungs were not ready and he failed extubation. The attending physicians sat us down to talk about Camden’s future where they painted a bleak picture at best. They discussed with us about making Camden DNR (Do Not Resuscitate) and told us how Camden is really sick and that his heart was failing rapidly. With no more options, we were faced with a nightmare situation, our boy was dying and there was nothing we could do except pray. When the doctors told us Camden was as good as he was going to get, we agreed to try and extubate Camden once again. Against the odds, Camden stayed extubated, but it was clear he was still in a very tough situation medically. Camden’s heart took a massive hit due to the RSV infection and he became dependent on the IV drug milrinone as well as several different medications to keep him comfortable and pain free. We were told by all of the doctors that Camden would likely not live to see his third birthday in June, so in March of 2014 we made the incredibly difficult decision to bring Camden home with hospice care in place. Not knowing how much longer we had with Camden, we made it our goal to give him as many memories and experiences as possible. We wanted as many pictures and videos of Camden and Parker together as we could get, and never used Camden as an excuse to not go do something. Through the help of many generous donations, we were able to take the whole family on a weeklong vacation to Orlando where together we all got to experience the magic of Disney, the wonder of Universal Studios, and the beauty of SeaWorld. Camden was so happy and smiled more in those seven days than he had in all of 2014 to date. Averaging an admission to Shands every ten days, we continued to work with Camden’s cardiologist, pediatrician, and other specialties to rehab Camden the best we could. Camden was not going down without a fight. After four months his cardiologist suggested we try and wean down on his milrinone drip. We took the wean process at an incredibly slow pace, making a change then waiting 2-4 weeks before making another change. All the hard work that Camden had put into recovering was paying off and on October 29, 2014 after spending 285 days on milrinone Camden’s cardiologist had us turn off the infusion pump. Camden had once again beaten all the odds and survived! Moving now into the 2014 holiday season, Camden is alive, well, and almost three and a half years old! Parker is the most amazing little brother that we as parents could ever ask for. Whenever something is wrong with Camden, Parker is right there to assess the situation and let us know his opinion on the matter. We have made many sacrifices to give the boys what they need.

I was diagnosed with Juvenile Idiopathic Arthritis when I was six years old. Arthritis is an autoimmune disease, meaning the immune system tends to attack itself. When I first got sick, my parents thought it was a really bad case of the flu, but over time I got worse. I was in the hospital for weeks because the doctors had a difficult time diagnosing me, and I missed months of school. The first few years were the most difficult because I was often very sore and tired and I was in the doctor’s office a lot. I had to take a lot of different medicines and going to school could be difficult at points. Generally, over the past few years, my arthritis has been under control and I have been in remission, but there have been periods of time where my arthritis has flared and caused other complications. The most recent setback I had was in my freshman year of high school. I was out for three weeks of school because I had a pleural effusion, which is when fluid builds up in the chest. I had a similar condition back in the third grade. It was a very painful and difficult time in my life, especially since I had just started high school and I didn’t know very many people there. However, since then I have gotten my arthritis back under control, and I am at a point where I only have to take four different types of medicine. Ideally, I hope to keep it under control and not flare again, but for now I am happy that I am doing well and having a normal teenage life.

Miracle Story: When I was born I was declared perfect! But before I was six months old I I was diagnosed with asthma. Just before my forth birthday I passed out after running into a store in the rain. I was sent to Joe DiMaggio where Dr. Orlando Arce figured out that I had Primary Pulmonary Hypertension, a very rare and deadly condition. I was only expected to survive a year! Dr. Arce started me on experimental medicine which I was on I until I was almost five. That was when I went up to Shands for treatment where I met Dr. Fricker. He added a new medicine which I got from a pump that put medicine right into my heart! When I was almost seven I got worse and my heart was not doing well so I went into Shands PICU to wait for a heart/lung transplant. I spent 345 days there and got my heart/lung transplant just after my eighth birthday! Thank God!. I’m very grateful to my family for being with me the whole time, Arts in Medicine, volunteers and therapy animals for helping keep me sane and the medical staff for keeping me alive. A special thanks to the donor’s family for giving me a chance to breath again and live! Since my transplant I have been doing great. Some of my favorite things to do are swimming, singing, dancing and cheering the Gators. I love the Lady Gators, especially Coach Amanda Butler whom I met during fundraising for Arts in Medicine and Jordan Jones. I got to meet all the Ladies Gator’s basketball team, watch games sitting right behind the team and even go to into their locker room! Gooooooooooooo Gators!! My white count is low so I do K12 Florida Virtual school at home. My favorite subject is science, I love to learn about the weather. I would like to be a reading teacher to little kids. I have lots of things I hope to do with my life. One is that I am hoping to see snow. I love cold weather as long as I can snuggle up and drink hot cocoa! It is very important to me to be able to tell people about PH in kids so maybe they will be diagnosed and get treatment earlier than I did and how important organ donation is. I’m thrilled that I had the chance to experience the Miss U of F pageant and that they have adopted the Children’s Miracle Network.. I can’t wait until the Dance Marathon at UF and being able to tell my story to help inspire the dancers to raise lots of money!

We’ve been attending Dance Marathon for 7 years now! It’s been a wonderful event yearly. And we’ve had some amazing opportunities through DM. Geoff was diagnosed with leukemia when he was 4 months old. He went through 1 year of chemotherapy at Shands and has been in remission since then. When he was 10 months he was diagnosed with a hearing loss not related to his cancer or chemotherapy. He was fitted with hearing aids at 12 months old. His hearing progressed to profound hearing loss and when he was 5 years old he got a cochlear implant at Shands. Geoff is a great kid and loves to read. He’s doing well in school and just finished taking his 3rd grade FCAT. He loves his baby brother, Legos, running, basketball, and the Florida Gators!

Some of you may have heard my story before, but for those of you who haven’t my name is Hyla Marlin, I am 10 years old and in 4th grade. So about 6 years ago, I was diagnosed Wilms Tumor – it’s a type of kidney cancer. I was in New York at a family camp, that’s when my mom and dad realized one side of my belly was puffed up, and they took me to a doctor. The doctor said that I had kidney cancer in my left kidney so the next day they flew me to Shand’s Hospital. A couple of days later, I had a biopsy surgery and then began 9 months of treatment. They had to remove my left kidney and I got chemo, radiation. Then I went back to my home in Belize, Central America. But one year later, the cancer came back in my lungs. I had 9 more months of treatment - I got chemo, radiation and stem cell transplant. It wasn’t very fun. But I loved my doctors, nurses and volunteers. And so many people provided stuff to make it nicer, like child-size equipment for taking my blood pressure, movies and games, because it is really boring being in the hospital all of the time. I love Dance Marathon – they have been so supportive of children like me. And by the way, this past June, I was 3 years cancer free. Thank you for supporting Dance Marathon and all of the other childhood cancer organizations. Cancer sucks.

Izabella and her twin sister, Jesubelle, were born 3 months premature at Memorial West Hospital in South Florida. At 3 weeks old Izabella had a pulmonary hemorrhage (she bled out from her lungs) which nearly took her life. She was transferred to Joe Dimaggio where she was stabilized and at almost five months old she was diagnosed with an extremely rare disease, so rare that it doesn’t have a name yet. Basically her lungs didn’t work and her only cure or chance at life would be a lung transplant. Two years ago in May we were transferred to Shands Hospital to receive that lung transplant. She was placed on the waiting list and we waited nine months for the call. Doctors never thought she would make it. Her transplant was performed on January 27, 2013 and she was discharged for the first time in her life on March 20th. She has been in and out of the hospital many times since, but continues to amaze doctors with her will to fight for life. CMN has been a great part of our lives in and out of the hospital. Many of the machines used on a daily basis to save Izabella’s life while she was on life support were donated by CMN or by their DM event held each year. DM and CMN have given our kids the opportunity to be "normal"kids outside of the hospital. From the Sweet Dreams event to the FTKarnival Kick off event to Dance Marathon and many other events held by DM and CMN, my kids have enjoyed being surrounded by the young individuals dedicating their lives to helping children like mine.

Jack was born on June 2, 2001 in Tallahassee Florida. He is one of 5 children, the only boy, with one older sister and 3 younger. In May of 2012 when he was an 11 year old 6th grader, he was diagnosed with AML (Acute Myeloid Leukemia). When his bloodwork came back not as mono but Leukemia our pediatrician told us to take him that very day to see Dr. Slayton at Shands Children’s Hospital. Our first few days were a blur of tests and meetings as they worked to define exactly what type and subtype of leukemia he had. We learned that instead of the more common ALL he had AML. We also learned that it was in his spinal fluid as well. The treatment for Jack’s AML was 4 consecutive rounds of chemotherapy. They told us that he would likely be at Shands for 6 months and that it would be unlikely that he could go home at all during that time. And so we became a family divided, with one parent at home with his sisters and one at the hospital from May until the end of October. Jack celebrated his 12th birthday in the awesome game room in 42 Peds with visiting friends, pizza, cookie cake and games. As the treatment continued visits like that would become less possible as he suffered the side effects and other illnesses that come with so much chemo and such a fragile immune system. He was able to keep in touch with some of his friends through xbox live and a several sets of headsets! Through it all Jack was amazing. He defied the odds and we were able to bring him home for a couple of days in between some of the rounds! How grateful we were to all be together and know that he was asleep in his own bed! He always told the doctors, nurses and his parents exactly what was on his mind. He didn’t complain (much), not nearly as much as he should have! His distinctive sense of humor and practical jokes were a joy and we are so proud of him for holding on to that during his treatment! (Ask him about his trip to the PICU and the monitors sometime, or the remote control spider!). Jack is our HERO. Our prayers were answered when we brought him home and we thank God every day for his remission! We also thank God for the amazing doctors, nurses, volunteers, social workers, and everyone else who devotes so much of their lives to making it possible for kids like Jack to not only SURVIVE, but to have some comfort during that time! The funds raised by CMN make such a huge difference in the level of care available for these kids! What a difference it makes to know you have available the best and brightest and most dedicated doctors and nurses, the latest drugs and therapies, all of the support staff imaginable to help the kids and their families get through times like these! And to the Dance Marathon kids, you ROCK! It is not just about fundraising, it’s also how you make all of our kids feel special and loved, and we thank you for all that you do FTK!

My name is Jake and I am 13 years old and in 7th grade. My leg hurt for a few months and Mom took me to the doctor. I found out this week that I have Ewings Sarcoma in my fibula. The good news is that they can treat this and they can just take out that bone because I don’t need it. I am going to Shand’s in Gainseville, Florida. It is too bad I have to go to Gator country for treatment but the doctors are great there. I am sad about missing my track season, soccer season, baseball season and unicycle club. I also can’t beleive I am saying this but I am really going to miss school and my teachers. Thank you for following my journey of recovery

Kaedyn B. is the five year old son of Nic & Shelsie who was diagnosed with A.L. Leukemia on Fridaythe 13, 2010. Kaedyn was born on September 22, 2009. He was over 8lbs in the 98th percentile in growth stats and looked to be the picture of newborn health. Kaedyn did many things early. Walking at nine months and scrambling to run in the last few weeks as he tried to keep up with his brother Kaleb (his hero) were things he tackled with spunk and determination. Two and half weeks before Kaedyn was checked in at UF Health, Shelsie took him to see his pediatrician because his cheeks were a little swollen. After a quick visit, Kaedyn was diagnosed with the mumps. A week later, his symptoms continued to worsen to include continued swelling in the cheeks and obvious pain in his stomach so Shelsie and Nic brought him to the E.R. They were then told that he was just experiencing the effects of mumps and were directed to take him home being sure to keep him in isolation. On Thursday night in the wee hours, his pain grew excruciating so he was again rushed to the E.R. where finally, doctors finally diagnosed him with leukemia and he was rushed to UF Health Shands Children’s Hospital. Blood tests confirmed that Kaedyn indeed has Acute lymphoblastic leukemia (ALL) which is a cancer of the white blood cells, the cells in the body that normally fight infections. Kaedyn finished his treatment on August 14, 2013. In just 4 months after treatment ended his cancer returned. His best chance at a cure was a Bone Marrow Transplant. He spent 4 months in the hospital with only a weekend break. He needed chemotherapy and radiation to get his cancer back under control. It was a very rough patch with multiple infections and him not being allowed out of his room. When his cancer was in remission once again he received his Bone Marrow Transplant on March 22, 2013. A month after his new cells entered his bloodstream he left the hospital and to this day has not been admitted. He is doing fantastic and is truly a little miracle child.

Hi, my name is Kalee. I’m 19 years old and have been treated at Shand’s for over three years now. I was transferred to Shand’s in 2011 when I was diagnosed with a slew of autoimmune and neurological related disorders including- Crohn’s Disease, Celiac Disease, Behcet’s Disease, Pain Amplification Syndrome, Anemia, Chronic B12 Defiency, Mitral Valve Prolapse, and Enthesitis Related Arthritis. My one doctor refers to it as a having a “cancerous” immune system. I am treated with immunosuppressant infusion therapies, steroid injections, and small doses of chemo I receive in variation every couple weeks. On top of regular procedures, I am also placed on a full liquid diet or feeding tube and dozens of medications to keep things in line. Thanks to the support I have received at UF Health at Shand’s, I am now a premed college student at the University of Florida hoping to one day make an impact similar to the one my doctors had on my life.

Kasey is a 6-year cancer survivor. She was diagnosed with Neuroblastoma when she was 9 months old. She had many surgeries. She also had 9 rounds of chemotherapy. Each time she had chemo she had to stay at the hospital due to her age. Kasey is a strong little girl and loves life to the fullest.

"Miss K" was born on June 2, 2011 via planned repeat C-Section. We knew of none of her issues prior to her birth. Within the first few hours, it was determined that she had VACTERL Association. This is an acronym that represents a number of things. (V=Vertebrae or Spinal issues) She has a wedge shaped L4. (A=Anal) She had a low imperforated anus....born without an anal opening. (C=Cardiac) She has Tetralogy of Fallot with Pulmonary Atresia, TOF/PA. (T=Trachea) She had a Fistula with tracheoesophageal (E=Esophageal) Esophageal Atresia. Simply put--she had an abnormal connection between her trachea and her esophagus...and her esophagus wasn’t attached to her stomach. (R=Renal) She has Hydronephrosis with a duplicated collection system and stage II kidney reflux on her Right Kidney. (L=Limb----> simply put, some people can/will be missing odd bones in their body for no reason. This is the only component of this that she doesn’t have). In addition to these issues, she also has Pulmonary Complications. Shands at UF has been our home away from home since Day 1. She was transported there from Munroe Regional and stayed at Shands the first 7 weeks of her life. She had her first set of surgeries on Day 5 and her first Open Heart Surgery when she was 26 days old. We are followed by 6 Pediatric Specialties (Cardiology, Pulmonary, Pediatric Surgery, GI, Nephrology, & ENT). In August, we are preparing for heart surgery #2. We have nothing but love for our pediatric department here at Shands and everything they have done for us

Madison was just two years old when she came to UF Health Shands Children’s Hospital. Since being diagnosed with a Wilms Tumor in her right kidney, she has undergone surgery and experienced many hospital visits during treatment for this rare form of cancer. Madison has recovered beautifully and she is almost five years cancer free! Her mother Ashley describes their last day in the pediatric infusion room as a celebration, where Madison’s nurses gave her a trophy that she still keeps by her bed. For her parents, UF Health Shands Children’s Hospital was a no-brainer as it is where Madison’s aunt, Dr. Shelley Collins, is a pediatric doctor. Her mom reflects on being in the hospital for five days and many chemo treatments with a two year old, mentioning “the toys, games, movies and playful distractions that CMN provides the children are vital to getting through the long days.” Amazingly, the Greene family says the most positive outcome has been becoming more active in organizations, like CMN, that help ill children and their families.

Mason was born at Shands with a congenital heart defect, Transposition of Great Arteries. He is a CMN Ambassador and loves participating in Dance Marathons. He is a true Gator fan and we look forward to going to the one at UF. Thanks for all that you do for such a great cause!

Matthew was picked up by ambulance and then airlifted by the ShandsCair helicopter from Spring Ridge after suffering a brain aneurysm. A brain aneurysm is a ballooning-out of the wall of an artery in the brain. Often this wall is weakened by disease, injury or an abnormality present at birth. They aren’t always life threatening, but serious consequences — such as a stroke — can result if one bursts in the brain. 1 He was treated in the PICU at Shands Children’s Hospital at UF from June 15 to July 13. He has recovered amazingly and will be returning to school this week.

Michael was originally diagnosed with a brain tumor when he was 2 years old. For 2 years, he underwent a series of MRIs to monitor his tumor. Just after he turned 4, they noticed some changes to the tumor. At that time, he ended up having 2 biopsies on his brain. Unfortunately, it was determined that the tumor was unable to be removed so he was referred to an oncologist to see about a chemotherapy regime. He underwent a year of chemotherapy. During that time, he had several hospital stays due to infection. He was always very brave and never complained. We were so grateful to have toys, games, movies, arts and crafts projects to occupy his time. These were all purchased by Children’s Miracle Network. On top of this, Michael also has a diagnosis of autism. He has been in speech, occupational and physical therapy since he was 18 months old due to the effects of his tumor and autism. He has recently learned to ride his bike and gets joy from bike riding and playing soccer with TOPS soccer. We are so proud of his accomplishments and appreciate the great care he received at Shands Hospital for Children in Gainesville. He still undergoes yearly MRIs and his doctors are very pleased with his progress.

Miranda was born dead, resuscitated, died again, resuscitated again - pronounced terminal, put on life support and sent to Shands. She had aspirated fluid because of a difficult birth and her tiny body shut down. She had no muscle tone and she responded to nothing - not even the many IV’s that were placed in her hands, her feet and her head. They said she would never leave the hospital, but she grew stronger and stronger - and to everyone’s astonishment - she was able to come home. Her quality of life was still in question because she had brain damage and she also had a birth defect called craniosynostosis. She would have a very "challenging" 12 years, filled with 3 major skull surgeries, 9 eye surgeries, 3 blood transfusions, 3 years of physical therapy and 4 very difficult years of school. Miranda has overcome every obstacle and has become an amazing teenager who is in advanced classes and on the A/B honor Roll.

Nathan was born seemingly healthy, but we quickly realized his health was in jeopardy when he was first hospitalized at 2 weeks old for respiratory distress symptoms. During his first few months of life, we realized our son was struggling with low muscle tone (hypotonia), gastrointestinal dysmotility, immune deficiency, liver dysfunction, respiratory difficulties, and metabolic changes. Every couple of months of his life seemed to add another specialist who helped unravel the cause of the mutli-system difficulties in Nathan’s body. Testing performed from a surgical muscle biopsy when he was a few months shy of a year old showed that Nathan had mitochondrial disease. Mitochondrial Disease is a genetic disorder that has caused havoc on the cells of many organ systems in our son’s body. The mitochondria are responsible for creating 90% of the energy needed by the body to sustain life and support growth. When they fail, cell injury and cell death can occur, and the life of the person whom this is happening is severely compromised. It is a degenerative disease that has no cure. This diagnosis does not deter Nathan from living an incredibly fulfilling life, however shortened it may be. Despite what his limitations are now and in the future, he continues to live a whole and incredibly happy life in however time he is given on this earth. He has lost many friends to this disease, but it does not keep him from living on joyfully through the obstacles that are presented. This disease has caused many issues in our son’s body, but it does not deter him from living an incredibly happy life. Nathan teaches us and so many others about true courage and strength as he continues to fight each obstacle with bravery and a heart-warming smile. Thank you. You may never realize the magnitude your words and actions mean to one individual or one family in all of this. The devotion you all give to each of these children lay heavy on their parents’ hearts, as we don’t know how we will ever repay you for your kindness, love, and devotion you all have shown to our children. Thank you. Those words seem so insignificant sometimes, but please know that they are coming from the very bottom of our hearts. Words simply can not express what our emotions feels in these times. Just...thank you.

When our son, Nathan, was ten months old, he underwent open-heart surgery. As first-time parents we were scared to death. Nathan was diagnosed with Tetrology of Fallot. His surgery required the repair of a tiny hole with a man made patch. This sounds so easy, however, he had a month-long stay at Shands Hospital because he had a few complications and his heart had to get used to the repair. My family and I are so grateful for his repair, the Shand’s Cardiology Team, surgeons Dr. Claudell and Dr. Alexander, his cardiologist Dr. Fricker and the team of nurses who took care of him. When it comes to the Cogenital Heart Center at UF, dreams can come true. Nathan’s surgery was at ten months old and he is now twelve and growing in leaps and bounds, enjoying life. Nathan is well rounded and thriving. He is certainly a “miracle”. Nathan attends regular follow-ups with his cardilogist, Dr. Chandran, who has been with every step of the way and nurse Connie. Both excellent in thier professions. With these wonderful people in Nathan’s corner, he will be able to live his life, making great stides, and with the peace of mind that Cardiology is there if he ever should need them. He is the type of kid who doesn’t let his diagnoses define him. He loves life and enjoys being in the group. Ever since Nathan was old enough to swim, he hit the pool, loving his lessons and swimming. He has come a long way as a heart survivor. I do not feel that, “Thanks”, was said enough to the generous staff and nurses, “The Team”, THANK YOU!

Nick was diagnosed with hypertrophic cardiomyopathy when he was 2 years old. Up until age 10, he simply took a daily medication to help his heart beat slowly and easily and lived life like any other boy. That changed in the summer of 2012 when Nick underwent a cardiac MRI to evaluate the size of his heart and its structures. Our family moved to Gainesville from Ohio in December 2011 for Jodi’s job. At that point, Nick started receiving his heart care from Dr. Jay Fricker at the Congenital Heart Center. Dr. Fricker wanted Nick to have an MRI of his heart. Nick had never had a cardiac MRI before because it really was not available at our previous hospital. The MRI results showed that Nick’s heart size put him at risk for developing a sudden and potentially fatal heart rhythm. We saw an electrophysiologist, Dr. Randall Bryant, who comes from Jacksonville to Gainesville regularly to see patients. Dr. Bryant recommended that Nick have an internal defibrillator placed under his skin with tiny wires attached to his heart so that any life threatening heart rhythm could be shocked back to normal a rhythm if necessary. Because of Nick’s hypertrophic cardiomyopathy he has regular visits with Dr. Fricker and Dr. Bryant. He has had one cardiac MRI and regularly gets heart echo tests and 12-lead EKG tests. He has also had blood work performed to identify a possible genetic cause for his heart condition. In September 2012 Nick had surgery at Shands for placement of an internal defibrillator. He spent one night on unit 44 pediatrics. Nick remains a very social and positive guy. He tries his best despite his obstacles. Because of his heart condition, he is not allowed to participate in moderately-intense sports like baseball, soccer or basketball. This makes Nick sad because he loves to play sports especially basketball and is pretty good at throwing a ball. Nick is, however, allowed to participate in the sport of bowling. After being off bowling for nearly 8 weeks to allow his defibrillator surgical site to heal, he got back into the “swing of things!” Nick bowls every Saturday with a Gainesville youth league and participates in 1-2 tournaments each year throughout the state of Florida. Nick particularly enjoys being involved with Dance Marathon at the University of Florida. He has met so many amazing college students who dedicate their time and energy to raising money for Children’s Miracle Network. Nick loves to hang out with the “big kids” and they treat him like a rock star!

When Randy was born, he had no clotting factors and had to have an open liver biopsy at 2 weeks of age, he was diagnosed with idiopathic neonatal giant cell hepatitis. They gave him 5 days to live and put him as a status 1 on the transplant list for a new liver. 5 days later he was dropped to a status 2 and given 7 more days. Mid-week he developed 2 infections and was dropped from the registry. At this point hospice became involved and the doctors worked towards sending him home to pass there because we didn’t want it to happen at the hospital. The day before he was to come home we got the call that a liver had become available for another patient at the hospital and that it was too big. So if they were able to successfully separate it then he could get the other half. At 28 days of age, and after 8 hours of surgery, randy received a liver transplant. That was 16 years ago. Now he is a thriving high school student at bucholz high school and planning to play basketball next year. We weren’t even promised 5 years yet we have celebrated over 16.

Sage was born with a congenital heart defect called Hypo plastic left heart syndrome. This basically means he only has half of a heart. His CHD was undiagnosed. We were being discharged from the hospital when we saw he wasn’t breathing correctly. He has undergone 3 open-heart surgeries, one at 1-week-old, one when he was 3 months old and one when he was 3 years old. Sage will eventually need a heart transplant when he’s in his late teen or early twenties. Sage was born in the Tampa area and flown by helicopter to UF Health Shands Children’s Hospital. After his 2nd surgery we moved to the Gainesville area to be closer to Shands and all of his doctors. Thru all of his doctors’ appointments and hospital visits, Shands has become our home away from home. Sage just had his 7th birthday and he is an energetic little boy who loves playing baseball and riding his dirt bike. He’s also a CMN ambassador. Our family appreciates the benefits of CMN and helping others by spreading awareness regarding CMN. Sage is truly our miracle

Samuel’s parents knew he was a fighter long before his birth. After a very complex pregnancy, Samuel was delivered full term and weighing 8lbs, the picture of normal physical development... except he was not breathing. Life-saving efforts in the NICU stabilized him but with the limited resources of his small local hospital, his parents had many questions on the mounting unexplained health issues. He experienced an acute life threatening event and was resuscitated only to be sent home on a monitor the next day to a terrifying week there before being ambulanced to the nearest Children’s hospital for severe bradycardic episodes and respiratory distress. In the many months to follow spent in and out of several hospital ICUs with extensive testing and numerous surgeries, teams of physicians tried to discern the source of his multi-systemic health concerns: encephalopathy, global developmental delay, tracheomalacia, seizures, Gastro- Intestinal dysmotility and paresis, hypotonia, oromotor dysfunction, apnea, bradycardia, respiratory insufficiency, fed by a GJ tube and failure to thrive. Told to expect he might never walk, talk or live a normal life, his parents continued to fight for answers. One difficult day surgical muscle biopsy results revealed what was threatening their son’s life. Samuel is fighting a mitochondrial disease. The mitochondria are the part of every cell responsible for creating 90% of the energy our organs need to function. When his body is compromised by stress or illness, cell injury and cell death follow. This condition is considered degenerative, progressive and he has fought through very difficult metabolic declines following typical stressors such as a warm ride in the stroller or even a simple ear infection. Samuel has this disease, but it sure does not have him. He has shown incredible strength and determination, defying all the odds and reaching milestones with such effort, therapy and support. He continues to amaze and inspire all those around him. If it were not for the care and support, treatments and interventions provided by Shands Children’s Hospital, Samuel might not be here today, showing us all how to manage challenging circumstances and appreciate life. Thank you for making a difference in the life of a child through the Children’s Miracle Network Dance Marathon. The funds you raise impact and improve the experience children have while going through difficult times. The results of your heartfelt efforts are made tangible by the smiles that illuminate our children’s faces despite what they endure. Just like the dancing spirit on that gymnasium floor, your spirit fills their hearts with joy and appreciation. Thank you for sharing this dance with them.

We learned that Tyler had a cleft several months before he was born. We saw the craniofacial team who helped prepare us for his birth and what challenges we may face. There was a team of specialists present when he was born. He had surgery at three months and was readmitted a few days later with some complications. After a challenging recovery, he regained his strength and grew to be the sweet, lovable 7 year old boy he is now. He loves CMN and Shands because as he says, they ’sewed him a new smile’. We continue to see the craniofacial team at Shands and benefit from the incredible team there!

As a healthy and active 7-year-old boy, Tyler enjoyed playing basketball, soccer, tennis and golf. Just like most active 7-year-old boys, Tyler enjoys sports and playing outside. In February of 2005 all of this changed. While practicing his basketball skills with his father, we noticed that Tyler could not bring his arm in without it shaking uncontrollably. We decided to have this examined and this was the beginning of a long and disheartening journey. Tyler was in and out of Shands Teaching Hospital in Gainesville, Florida and many other nationally renowned hospitals. Tyler was examined by many specialists that performed numerous painful tests and treatments that resulted in dead ends and misdiagnosis. This was extremely frustrating to everyone but none more than Tyler. During one of Tyler’s inpatient stays at Shands, we were introduced to Dr. Michael Okun. This meeting resulted in his examining of Tyler and rendering a diagnosis of Primary Generalized Early-Onset Dystonia. This was confirmed with a blood test for the Dyt1 Dystonia gene. Though we were all relieved to have a “diagnosis”, we were also very distraught with what we learned about this devastating disorder. Dystonia is a neurological movement disorder affecting the central nervous system characterized by involuntary and often painful spasms of the muscles. This disorder currently has no cure and progressively robs one of the ability to control voluntary movements and even the ability to walk. The earlier that a child shows symptoms of Dystonia, the more significant those symptoms become. Our son, Tyler, is now very disabled. Although Tyler grows physically and mentally normally, he is twisted, cannot eat or speak without extreme difficulty, cannot walk, read a book, or play with other kids like he used to. Tyler is remarkably good-natured and continues to have a positive attitude about his dystonia. A few years after Tyler’s diagnosis our daughter Samantha started showing symptoms and was diagnosed with generalized dystonia. Since Tyler and Samantha have the genetic form, there is a 50/50 chance that our youngest child will carry this gene and a 30% chance that he will become symptomatic of it.

William was 15 months old when he had his first pediatric cardiology appointment at the UF Health Congenital Heart Center. He spent most of the first year of his life sick – reflux, congestion, extreme eczema, repeated respiratory infections, including pneumonia at 8 months old, which landed him in our local hospital for a solid week. When William was 11 months old, he was hospitalized again — this time with rotavirus. It was during that hospital stay that his new doctor diagnosed Scimitar Syndrome, after William had a chest CT scan done to rule out a possible respiratory infection. Scimitar Syndrome is a birth defect that adversely affects the right lung and right side of the heart. In June 2006, when William was 2, he underwent his first open-heart surgery. Everything was great for about six years, and we returned about two to three times a year during that time for pulmonary and cardiology checkups. In August 2012, Dr. Fricker noticed the slightest change in William’s heart. William had a cardiac MRI and then underwent his second cardiac catheterization. The MRI and cath showed that William had a blockage in his scimitar vein and had developed pulmonary hypertension. Five days before Christmas in 2012, when William was 8, he underwent his second open-heart surgery with Dr. Bleiweis. Since then, we have cardiology and pulmonary checkups about every 6 months. In February 2014, Dr. Fricker noticed that William’s pulmonary pressures were creeping up again. In May 2014, William underwent his third cardiac cath. During the 8-hour procedure, they were able to balloon open William’s scimitar vein and his inferior vena cava, both of which were blocked. The angioplasty procedure saved William from another immediate open-heart surgery. He will need more interventions in the future, but he’s doing very well right now. He plays flag football and has been able to keep up with his friends much better than before his interventional cath. William has had so many best days in his life, a few of which were made possible by Children’s Miracle Network. Some of his other best days include being able to get out on the field and play flag football like all of his friends, and going to amusement parks and being able to ride whatever he wants to ride. He’s mostly a happy kid who enjoys being active, playing football with his friends, hanging out with his older brother, Martin, and just being a regular kid. The level of care available at UF Health Shands Children’s Hospital and the UF Health Congenital Heart Center has meant my son’s life. He would not be the active, healthy, smart-aleck, energetic kid he is without them. It’s quite possible that without UF Health’s care, he wouldn’t be here at all. UF Health Shands Children’s Hospital is a magical place. And Children’s Miracle Network is a huge part of that magic.

Wyatt was born with 5 major heart defects that led to complete heart failure. At 2 months old he had to be placed on the Berlin Heart(mechanical heart) to help sustain him until a donor heart became available. After 217 long days Wyatt received his Gift of Life. After a total of 276 days , at the age of 10 1/2 months we were finally able to bring our Miracle Baby home. He hit the floor running and has not stopped yet.