Brian “B-Money” Murkison
Brian Murkison was 7 years old when he was injured in a car accident, leaving him with a severe Traumatic Brain Injury. Though doctors initially predicted he would never regain his ability to eat, walk, speak or learn, Brian has defied all the odds. He regained all of these functions, and today is a happy 14 year old in seventh grade. He continues to work with CHOA doctors and therapists to regain fine motor function, but has come an amazingly long way in 6 years. His favorite activities are listening to music, singing, and making people laugh. His nickname is B-Money (self-chosen) and he doesn't ever miss a chance to make the day a little bit better for people he meets.
Hailey was diagnosed shortly after birth with several heart defects (LTGA, VSD, ASD, Dextrocardia, Pulmonary stenosis, and SVT.) A few days after her first birthday in December 2015 she had the Double Switch open heart surgery. This surgery is very complex and took around 9 hours. She had some complications from that surgery that required her to be tube fed for months afterward. In June 2018 a heart catheterization showed a leak that needed to be repaired, so in October 2018 she had a second open heart surgery to repair the leak and replace her conduit. A week later she was released and has done really well since! She loves to dance and sing and play outside. All in all, she is a normal 3 year old
Nathan was diagnosed with an absent left pulmonary artery at the age of six, after visiting the hospital for the flu. At age seven, doctors at CHOA placed a stent in Nathan’s left artery in hopes that it would grow large enough to connect it properly. A year later, his left pulmonary artery was reconstructed and connected successfully! Now Nathan does not let his past stop him as he is training and competeing in an American Ninja Warrior course, plays soccer and is obsessed with Parkour!
Liam Augustine Striker was born April 20, 2016. At six weeks old, he was diagnosed with a rare disease called Biliary Atresia, which inflames the bile ducts and scars the liver. Though there is no cure for BA, there is a surgery called a Kasai procedure where the blocked bile ducts are replaced with a length of the baby’s own intestine. Liam had his Kasai procedure on June 17, 2016. He recovered quickly with no complications, had to take four daily medications, and had an NG tube to help him gain weight. He then had a PICC line for 2 months to receive medicine to help him become healthy enough for a liver transplant. When his Kasai procedure eventually failed in November of 2016, Liam was put on the liver transplant list. After 3 months of waiting, 10 month old Liam received his new liver on February 27, 2017! Liam is now over a year post transplant, and went from taking 10 daily medications to only 2!
When she was just five months old, London suffered from a double ear infection. Knowing she’d had a rough night, London’s mom Alexis got up to check on her at 4 a.m. She found the baby in her crib with her eyes fixed upward and breathing very slowly. The family rushed to their local emergency room. Doctors stabilized London and started her on a ventilator, but quickly realized the problem was more severe than the hospital was equipped to handle. London was soon life-flighted to Children’s Healthcare of Atlanta. Following a spinal tap, doctors diagnosed London with bacterial meningitis, an infection in the spinal fluid, which can cause brain damage and hearing loss and can be fatal. London was immediately put on several antibiotics and her parents wondered if their baby girl would survive. After a stressful few days, London began responding to the antibiotics and soon came off the ventilator. She is still deaf in one ear but she continues to progress, and has frequent check-ups at Egleston to ensure her speech and language skills continue to improve. Her family was so grateful to the staff at Egleston that her mom actually took a job as a Grants Financial Coordinator for CHOA, since she believed they were truly dedicated to their motto, “All Better.” London is a Miracle Child because she continues to defy all odds and has overcome so much in her few years of life, and will continue to inspire future kids and families in their journeys for years to come.
Lars’ journey at CHOA began immediately upon his entrance into the world. After an emergency caesarean section at just 27 weeks to save his mother’s life, doctors thought Lars might live just a day or two: but Lars had other ideas. At five days old, he was moved to Children’s, where he had his first surgery—the first of many this little fighter would face. Born with hydrocephalus, a condition in which fluid builds up in the brain, Lars needed a shunt to divert the fluid into his stomach and three more surgeries to close a hole in his intestine and enable him to properly digest milk. It was nearly 4 months before Lars could go home from the hospital. At 6 months old, he had a heart attack. His mother says they spent so much time in the hospital that all his first holidays, his first birthday and his second Christmas were celebrated at CHOA. Lars is now four years old and has undergone 12 surgeries. He has some developmental challenges, due in part to cerebral palsy, a neurological disorder that affects muscle movement. Fortunately, he loves going to therapy at Children’s Center for Advanced Technology and Robotic Rehabilitation and using the machines, especially the bike. Now a very outgoing and happy kid, Lars loves being around people and animals, being outside, playing sports and singing. Lars has already overcome so much in his short life and still has some challenges ahead. His mother knows the future may be complicated for Lars, but is confident they can handle it, because he is her Miracle Child.
Born at 24 weeks gestation, Landon was given four hours to live. As a young child, Landon struggled to breathe properly and also suffered from seizures. His parents were told that he would never be able to walk or talk and would only be able to communicate through sign language. However, with the help of speech and physical therapists, he was able to mimic exercises and learn motor skills. Although Landon began school with some delays, he is now the healthiest he’s ever been as a 5th grader! He enjoys playing sports and watching “Big Brother” play on game days!
Luke was diagnosed with a VSD (hole is in heart) at about 6 months gestation - potentially close pre-birth, post-birth, or require surgery. Within hours after birth it was discovered he had a TEF/EA and DA, growth between his trachea and esophagus (TEF), a blunt end to his esophagus (EA - did not connect to stomach), and a blockage from stomach to intestine (duadenol - DA). It was also determined the VSD was large and would require surgery. He was transferred to Scottish Rite 4 hours after birth. His first surgery was 12 hours after birth when they repaired TEF and DA and inserted a feeding tube. The second surgery was at 8 weeks old where they repaired the VSD at Egelston. The third surgery was at 12 weeks where they repaired the EA. He came home Christmas Eve. Luke is now an active soccer player, baseball player, and does jiu jitsu. He is a great big brother and excelling student!
Madeline's journey with cancer began in the eighth grade. After having strange bruises covering her legs for almost four months, Madeline's mom took her to the doctor to get blood work done. Although the results should've come back two weeks later, the doctor called her mom with the terrible news. Madeline's parents picked her up from school and took her to Scottish Rite hospital where the doctors told Madeline that she had Chronic Myelogenous Leukemia. January 27th began her time in the ICU receiving chemotherapy and blood transfusions to treat her. Although it was a terrifying time, the doctors and nurses at Children's Healthcare were so supportive and positive. They made sure she understood everything that was happening on an eighth grade level, and made a hospital visit as fun as it could be. Because she stayed at a Children's Miracle Network hospital, she was surrounded by such a supportive staff and her treatment and time spent at the hospital were much less difficult on her and her family. Now, Madeline is a very active graduate of the Industrial Engineering program at Georgia Tech and served as the Recruitment VP for CPC, a member of GT Cheerleading’s navy squad, and had a co-op at The Coca-Cola Company.
Zuri was born on October 31st 2000 (Halloween) at Kennestone Hospital. Something was wrong but no one was giving her family any answers. Her mom, Lisa, checked out of the hospital and took Zuri to a Neurosurgeon at CHOA Scottish Rite. At 3 days old, Zuri was diagnosed with Spina Bifida/intradural lipoma tethered cord. She was operated on at 15 days old, again at 15 months old, and again at 12/13 years old. She spent her 13th birthday in the hospital. The Palmers do not know what they would do without Children's Healthcare of Atlanta at Scottish Rite. All the Pediatric specialists, therapist, nurses and staff were so wonderful. Thanks to everyone at CHOA, Zuri has been able to live a full and happy life with just a few bumps along the way!
At the age of 27 months, an MRI found a tumor on his brain stem and cerebellum. They said it was likely the type of tumor that wouldn’t grow so we didn’t hesitate to move when Daddy got a teaching job across the country. Just three months later, the next MRI showed growth and we were told Matthew had six months to live, unless he happened to have a specific mutation that his oncologist was looking for to try a new adult skin cancer drug. We consented to the biopsy that had been heavily warned against, and Matthew had the mutation! A chance to beat high grade brain stem cancer! He quickly had stomach surgery to install a feeding tube for administering the giant adult pills and this new chemo began. But, two weeks later he was pulled off the drug after a bad sun reaction. One week after that, we were in the trauma room of the ER as Matthew’s little body began to shut down. We were heartbroken. The tumor had rapidly grown and we were now being told he had six weeks left with us. Though we had previously decided against radiation, we decided to began it right away, in hopes of buying time for another try at the drug. Radiation was such a success that we did not have to restart the drug until another MRI showed enhancement the next July (2015). This time we knew to avoid sunshine and we knew not to come off of the drug, for fear of more rapid growth. On October 28th, Matthew’s MRI showed the tumor had drastically shrunk! We are so hopeful that the drug will continue to maintain the tumor’s size.
Matthew’s life-flight trip to CHOA in 2015 was his third time there, after having open heart surgery at 7 months old and again when he was 5. In 2015, he was coming home from basketball practice when the car carrying him, his dad, and his brother Drew was struck head-on. Matthew and his dad had life-threatening injuries, and his brother didn’t survive. When Matthew arrived at the Intensive Care Unit (ICU), he had a severe traumatic brain injury, a collapsed lung, bruises and bleeding in both lungs, as well as a bone-deep laceration on his ankle which turned septic. For the first three weeks, he was put into a coma so that his brain could heal. As he began to awaken, his parents were worried the news of his brother passing would cause setbacks. But his doctors were confident in his abilities, and he proved them right by working tirelessly in therapy, using his brother as his inspiration. He went from the ICU to stay in the Children’s Inpatient Rehabilitation Program, where he was able to take advantage of the robotics equipment at the Center for Advanced Technology and Robotic Rehabilitation. When he began his journey, Matthew couldn’t sit up on his own. But only a year later, he was walking with only an ankle brace and a crutch to assist him. Matthew continues to push himself in outpatient physical therapy and plans to return to playing basketball and baseball to honor his brother’s love of sports. Facing so many setbacks so early in life with such a fighting spirit makes Matthew a truly inspiring Miracle Child.
Born prematurely at 24 weeks, T.J. weighed 1 pound, 12 ounces. A few days after his birth, he began to critically decline and was diagnosed with necrotizing enterocolitis (NEC), a condition common in premature babies which can result in the death of intestinal tissue. T.J. was quickly transferred to Children’s, though doctors did not expect him to live due to his size. Drains were placed in his abdomen to address the NEC, but he then developed pneumonia and sepsis, and would need a blood transfusion. This was just the beginning of T.J.'s 102-day stay in the Neonatal Intensive Care Unit (NICU). His mother stayed by his side the entire time, resting in the sleep room when she could. Unfortunately, doctors would have to wait to perform an exploratory bowel surgery until he had grown enough for his little body to handle the pressure. Once he was ready, doctors soon fixed his perforated bowel and removed his appendix, but thankfully did not have to remove any other parts of his gastrointestinal system. More than three months after his birth, T.J. was finally able to go home for the first time. Accompanied by a feeding tube and an apnea monitor, he would face a slow but steady road to recovery, and would need the help of the Children’s speech and physical therapy programs. T.J. is now 6 years old and is walking and talking—the epitome of a happy and healthy young toddler. He and his family make regular visits to Children’s to keep up with his development, and they could not be happier with the care he has received.
Cate is 11 and she has Autosomal Recessive Congenital Ichthyosis, also known as ARCI. It is an extremely rare genetic skin disorder that causes her skin to grow too quickly. To give you an idea of how rare it is, conjoined twins happen 1 in 200,000 live births, while Cate's condition occurs in 1 in 300,000 live births! Most people reproduce their skin every 2 weeks but Cate's skin reproduces every 24-48 hours. Because of the toll that takes on her body, Cate has to consume an extra 1,000 calories a day, just to cover skin production! This is a condition she will have for the rest of her life since it is a gene mutation. Specialists at Yale-New Haven Children's Hospital (another CMN hospital) isolated the gene that mutated in Cate's DNA after searching for it for 5 years! She was previously seen by a dermatologist at Egleston but after some problems with the doctor, her family switched to the specialists at Yale in Connecticut, as they are the leading specialists in ARCI. In addition to her skin over production, Cate does not sweat. Her family has to keep her in a very specific temperature (68 -70 degrees F) to keep her from overheating because her body can't control its temperature and will easily overheat. They have a number of accessories that Cate uses to keep her from overheating, too, such as an ice vest and a portable fan. Cate currently plays for the Atlanta Jr. Hawks Wheelchair Basketball team and they are ranked #5 in the nation! She started a new school in December 2018 and now attends Alexander Prep. She LOVES her new school and is excited to learn Spanish and Mandarin there this year!
In 2009, 8-year-old David seemed healthy and happy. But in the fall of that year, he was rushed to Children’s Healthcare of Atlanta, where doctors told his family he had acute liver failure and would need a transplant to survive. A week later David underwent a liver transplant. Unfortunately, David had complications, and doctors determined the new liver was not working. Two weeks later, David underwent his second liver transplant. Today, David is thriving in high school and enjoys playing soccer as well as hanging out with his brothers and sisters.
Nicolas’ journey with cleft lip and palate began before he was even born. Veronica and her husband, Alejandro, were informed at her 16-week ultrasound that their son would be born with a congenital defect on his face and lip. Though they would have to wait for the delivery to know the extent of the condition, the family already had a team in place at Children’s Healthcare of Atlanta planning for his treatment. Cleft lip and palate is a complicated condition, and more than just a cosmetic issue—it can cause life-threatening difficulties with feeding and nursing in the first months of life. It also affects the entire ear, nose and throat system, causing potential problems with draining and infections. His care team at Children’s worked closely with Alejandro and Veronica and informed them of everything to expect upon his arrival, which included a complex series of specialized treatments and procedures. As soon as Nicolas was born, he was outfitted with a special bottle so he could safely and healthily get nourishment. At just 2 months, he underwent his first of several surgeries at the Craniofacial Clinic to begin repairing his lip and palate. Afterward, he had an appliance implanted into his palate that would help close it up. Nicolas is now 3 years old, and though his medical journey has been arduous, Children’s has been with his family every step of the way. Apart from treating the physical aspect of the cleft lip and palate, Nicolas has also had extensive treatment with dentists, ear nose and throat specialists as well as speech-language pathologists to help with his adjustment. Despite all he’s been through, he is a very sweet toddler, and these days always has a huge smile on his face—something his family is incredibly grateful for every single day.
Newborn Mallory was home for just 10 days before her mother realized she was seriously ill. Within minutes of arriving at her pediatrician’s, an ambulance was called. Mallory was turning gray and her breathing was labored. After being rushed to Children’s Healthcare of Atlanta, doctors discovered her heart rate had shot up to over 220 bpm. While her team worked to stabilize her, she was diagnosed with myocarditis, a virus that attacks the heart. In order to give her tiny heart and lungs a rest, doctors recommended extracorporeal membrane oxygenation (ECMO), a process where heart and lung bypass machines assume a patient’s heart and lung functions, allowing them to heal. After 10 days on ECMO, she slowly began to get better—but her heart still wasn’t working at full capacity. As the weeks turned into months, she was able to go home, but her heart was growing faster than her body needed, and it was still not pumping enough blood to keep up. For almost two years her family waited to see if she would get better, making frequent trips to Sibley Heart Center to monitor her progress. Finally, in 2014, after waiting 62 days, Mallory received a new heart. The transplant surgery took four hours, and she received her new heart successfully. Surprising nearly everyone, she was ready to go home less than a week later. As a Miracle Child, Mallory has spent her entire life fighting and has inspired countless people.
During a soccer tournament in May 2012, 13-year-old Cade Roberts was hit in the abdomen with a ball and began to vomit. As the pain worsened, Cade’s parents rushed him to Children’s, where he was admitted to a trauma room in the Emergency Department. Initial scans revealed a significant amount of internal bleeding that required emergency surgery. It was unclear whether Cade would recover. During his surgery, Cade was diagnosed with a congenital horseshoe kidney, a condition that causes the kidneys to be fused together. Doctors discovered that the ball’s impact had caused the organ to split. If Cade’s condition had not been diagnosed during his surgery, it could have caused potentially fatal complications later in life. After three weeks in the hospital undergoing surgeries and physical and occupational therapy, Cade was sent home—with two working kidneys and a green light to play soccer again.
During March 2012, when she complained that one knee was sore, her parents, Tiffany and Patrick, told her to rest and ice her knee. When the pain didn’t subside, Tiffany and Patrick took Bailey to get an MRI scan. The test confirmed every parent’s worst nightmare: there was a tumor in their daughter’s knee. A biopsy confirmed a terrifying diagnosis of osteosarcoma, a rare and aggressive form of bone cancer. The Moodys immediately researched their options and decided to bring Bailey to the Aflac Cancer Center. With help from her parents and physicians, Bailey made the difficult decision to have chemotherapy and rotationplasty, a surgery that removes a portion of the limb and then rotates and reattaches it. Her ankle became her new knee joint. While the surgery was intimidating, it meant that Bailey would be able to enjoy an active childhood once she recovered. Now cancer free, Bailey has returned to her active lifestyle with the help of the Children’s Orthotics and Prosthetics Program and rehabilitation services. She and her parents work together to raise awareness to help other children affected by the disease. Tiffany and Patrick agree Bailey’s health journey at Children’s has made them a stronger family.
Elijah’s medical journey began in 2011. Over the course of a week, several appointments and multiple trips to the hospital, doctors rushed to figure out why 21-month-old Elijah was in continuous and intense pain. An ultrasound soon revealed every parent’s worst nightmare: a tumor. Elijah was immediately admitted to Children’s Healthcare of Atlanta, and by the end of the weekend he was diagnosed with stage 4 neuroblastoma, a particularly aggressive form of cancer that grows off the adrenal glands in the kidneys and can spread into the bones. Doctors informed his family that the survival rate was around 20 percent. Two days later, Elijah began his four-year battle to beat neuroblastoma, beginning with his first of a total of six rounds of chemotherapy. He also had to endure a four hour surgery to remove the tumor, losing one of his kidneys in the process. He would eventually go on to face twelve rounds of radiation, two stem cell transplants and a host of other therapies and treatments. In order to beat the cancer, his tiny body faced incredible pain and side effects from treatment. Elijah and his family threw every ounce of strength they had at fighting his cancer, and fortunately, they prevailed. He has been in remission for three years and is now a healthy 7-year-old excited about playing sports. To look at him, no one would ever guess just how he has defied the odds or the staggering amount of treatment he endured when he was younger—and that truly makes him a Miracle Child.
Paige was diagnosed with dilated cardiomyopathy at the age of 5 months (April 8, 2011). She had been treated for acid reflux for several weeks and the pediatrician sent her to a GI specialist for further treatment. He immediately got her an appointment with a cardiologist at Scottish Rite where they saw that her left ventricle was very enlarged and was not pushing much blood out to the rest of her body. Paige spent 5 weeks in the hospital trying to see if her condition could be treated with medications; doctors weren't sure how her heart would respond. It was a bit of a roller coaster but the doctors and nurses were so helpful and supportive. Paige was placed on the transplant list on September 13th and had to stay in the hospital to wait because she was put on IV medication to help her heart. Her family received a call on the evening of September 29th, and her transplant took place in the early morning hours of September 30th. Since her transplant, Paige has undergone one biopsy at one month post-transplant which showed that her body is accepting her new heart with zero rejection. She loves Star Wars and playing with her brother and sisters!
When Sutton was just 5 days old, her parents received a call from their pediatrician: their daughter had cystic fibrosis (CF). The genetic disorder can cause life-threatening lung infections, obstruct the pancreas, and stop natural enzymes from helping the body break down and absorb food. Just an hour after the diagnosis, the team from the Children’s Cystic Fibrosis Center called to help the family deal with the overwhelming news that their precious daughter would face a lifetime of health challenges. The Burnetts traveled to the CF clinic the same day. Their physician assured Brittany and Jeff that the team at Children’s would be there for them no matter what. Along with the pressures of having a newborn, they had to make sure Sutton stayed healthy. While there is no cure for CF, the Burnetts remain hopeful, and Children’s will be with them every step of the way!
When Alison was 22 months old, she fell two stories out of a window, landed on concrete, and shattered her skull. She was life-flighted to Scottish Rite where she had emergency brain surgery. Her parents were told that she might not make it through the night and she was put into a medically induced coma. When she awoke, she was effectively paralyzed on her right side. They performed a second brain surgery to insert a titanium plate. After a long recovery process, Alison made a full recovery and is a 16 year old student in a high school magnet program for medical sciences.
Born Nov. 12, 2004, Belle was diagnosed just a month later with congenital nephrotic syndrome, in which an abnormal protein in the urine causes the body to swell. Belle’s parents, Kyle and Michelle, were told their daughter’s kidneys would not last longer than 18 months. As the Heltons approached the first anniversary of Belle’s diagnosis, doctors said she showed unexplained improvement—while she still had the disease, it was not damaging her kidneys. Then, in March 2010, 5-year-old Belle experienced renal failure and started dialysis. Though both parents were a perfect match, they decided Michelle would donate her kidney. Before moving forward, however, Michelle had to undergo a mammogram. She learned she had two malignant tumors in her left breast—something that could have gone undiagnosed for years if her daughter had not needed a transplant. Belle’s surgery was put on hold as Michelle received aggressive doses of radiation and chemotherapy. Because Michelle was undergoing treatment, in February 2012, Kyle gave his kidney to his daughter, who is now a thriving young lady who loves to play volleyball and sing!
Harrison was born March 9, 2002 after an unremarkable pregnancy - after 3 days of labor and an unscheduled c-section. He was instantly put on oxygen and whisked off to the NICU, where he spent the first three and half months of his life. He endured more tests, needle pricks, and surgeries than most people endure in a lifetime. He had to stay on constant oxygen, was fed breast milk through a feeding tube and was plugged in to more machines than we could even count. He had problems with his respiratory system, his heart, his lungs, his brain and his vision, and he was extremely floppy. When Harrison turned four years old, he was having his tonsils and adenoids removed to help clear some of his airway and help with his breathing so his family decided to repeat the muscle biopsy that was done unsuccessfully when he was an infant with the hopes of getting some answers. The test results this time showed a deficiency in Complex 1 and proved that he has some type of Mitochondrial Disorder. Harrison currently receives physical therapy, occupational therapy, speech therapy, and therapy for using an augmentative device. He has to follow-up with ten different specialists each year and he is required to go in annually for multiple screenings and lab work to ensure that his organs are not showing signs of progression of the disease. He takes many medications and supplements to try to stay ahead of the disease but continues to improve every day.
When Olivia Harvey was born, her parents had no idea that their daughter was anything but happy and healthy. A last-minute check by a nurse resulted in a diagnosis of multiple heart defects in addition to a congenital heart defect (CHD). Olivia was soon referred to Children’s where she had an echocardiogram that revealed more critical news about the state of her tiny heart. At just 6 months old, Olivia underwent her first open heart surgery at Children’s and spent three weeks in the hospital recovering. Though the surgery was a success, Olivia has had to face other struggles because of her condition. With CHD comes a whole host of other complications. Sadly, she has had issues with her liver, spleen, a brain aneurysm and Noonan’s syndrome, a genetic disorder that affects growth. Fortunately, Olivia and her family have Children’s right in their backyard for all of her medical needs. At 9 years old, Olivia had her second open heart surgery. Admitted on a Tuesday, this incredibly brave girl was home by Friday afternoon. Olivia is now 16 years old and loves dancing and horseback riding. She hopes to spread awareness of CHD by sharing her story.
While Crysie Grelecki was pregnant, an ultrasound showed her unborn son had a larger-than-normal head. Doctors at Children’s Healthcare of Atlanta diagnosed him with a skull deformity called craniosynostosis and hydrocephalus, which causes excess fluid on the brain. A team of neurologists met with the expectant parents to determine a treatment plan. At 2 days old, baby Parker underwent surgery, during which doctors placed a shunt in his brain to drain the excess fluid, allowing it to grow and develop naturally. When Parker was 6 months old, doctors began a series of craniofacial surgeries to correct the skull malformation. By the time he was 20 months old, Parker had undergone seven successful surgeries at Children’s and was on his way to recovery. Parker is now a very social boy who loves to talk, dance and cheer on his Auburn Tigers and FSU Seminoles!
At age 3, there were sudden drops in Sarah’s energy level leaving her lethargic, - almost limp. At bedtime she complained of severe pain in her joints. Her thirst became increasingly frequent as her appetite all but disappeared. Watchful concern gave way to worry, and a visit to the pediatrician culminated with one simple, but unforgettable phrase, “Mom, we have a problem.” Sarah’s liver was swollen. Nine days later, after extensive lab work, an ultrasound, and a liver biopsy, Sarah was diagnosed with Autoimmune Hepatitis with stage 4 cirrhosis of the liver. Sarah’s body was rejecting its own liver causing severe, irreparable damage. None of the numerous medications tried over the next three years was successful in curbing the progression of the insidious disease. The enlarged liver and spleen filled Sarah’s abdomen. The pain was overwhelming. In early January, 2004, Sarah was placed on the list for a liver transplant at CHOA at Egleston. Sarah received her gift of life, a liver, on March 17, 2004, and will celebrate her eleven year anniversary having had only one occurrence of rejection. Sarah will always take anti-rejection medications and liver function will be closely monitored since a transplanted organ can be rejected at any time. In addition, she contends with chronic migraine headaches and a painful form of arthritis every day that affects her hips, knees, and ankles. At eighteen she carries a full load in the 12th grade and hopes to take a gap year next fall in the mission field before starting college. Though she continues to face overwhelming obstacles, Sarah perseveres with determination, grace and confidence because of her faith in Jesus Christ, her Lord and Savior, who has given her strength, hope, and joy on her journey. Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. (James 1:12, NIV) God began His miracle through Sarah on the day He created her. And He is not finished with His miracle through her life. We are blessed to share our family’s story as the testimony of Sarah’s journey continues to make a difference in the lives of others!
Lucie Butler was unable to breathe from the moment she was born. Although immediately intubated, the first 36 hours of her fragile life were unstable. She developed persistent pulmonary hypertension, and her blood/oxygen level remained dangerously low. Lucie was rushed to Children’s Healthcare of Atlanta and placed on extracorporeal membrane oxygenation (ECMO), a machine that did the work for her heart and lungs, allowing Lucie to rest and heal. She stayed on ECMO for nine days – she wouldn’t have survived without it – and remained intubated for a long time after that. The doctors at Children’s realized that she would need surgery on her diaphragm. After a successful procedure, and three months in the Neonatal Intensive Care Unit, Lucie made a complete recovery. These days, the only things that get her out of breath are dancing and singing to her favorite songs!!
When Grant was born on January 11th of 2010 he had a life-threatening condition called Congenital Diaphragmatic Hernia. Essentially, his diaphragm, the muscle that separates his abdomen from his chest cavity failed to fully develop in utero thus allowing all of the contents of his abdomen to travel to his chest cavity. Grant’s stomach, colon, intestines and spleen were growing on top of his left lung. He was immediately placed on life support and transported by the Children's Healthcare Neonatal transport team to Egleston hospital. Here he was placed on morphine, methadone, norcuron to keep him completely paralyzed and literally dozens of other medications and machines to try to keep this 5 lb baby alive. Over half of CDH babies don’t make it out of the delivery room, much less make it through surgery. Every day seemed to be one step forward, two steps back as they slowly tried to wean him off his oscillating respirator in preparation for surgery. At 8 days old, Dr. Meghan Durham performed Grant’s de-hernia surgery to repair his diaphragm, pull his abdominal organs into place while somehow holding two petrified parent’s hands at the same time. Over these heartbreaking weeks at Egleston, Grant was painstakingly slowly taken off his respirator and put on oxygen; he opened his eyes for the first time and little by little began to heal. Today, Grant is healthy, beautiful and full of life. He is truly a miracle - thanks to the many prayers and support of friends and family and the amazing care he received at Children’s Healthcare of Atlanta.
The Faas family adopted Kerrigan from China in December 2009, knowing that when she arrived in the United States, two-year old Kerrigan would need surgery to repair her Tetralogy of Fallot, a congenital heart defect. The condition affects the structure of the heart, causing oxygen-poor blood to flow out of the heart and into the rest of the body. Doctors at Children’s performed a successful open-heart surgery on March 12, 2010. But the following day, Kerrigan had complications and went into cardiac arrest. She was immediately placed on ECMO—a sophisticated bypass machine that assumes a patient’s heart and lung functions, allowing these organs to heal during critical illness. When doctors took her off ECMO three days later, Kerrigan began having seizures. As a result of the cardiac arrest, she had suffered a brain injury from lack of oxygen to her brain. Kerrigan was in a comatose state for a week. She then began showing signs of improvement through small limb movements and some eye contact. She was then transferred from Egleston to Scottish Rite. There she underwent four weeks of intensive therapy and has recovered miraculously from the brain injury. Kerrigan now attends yearly checkups with her cardiologist at Sibley Heart Center Cardiology at CHOA. Additionally, in 2014 Kerrigan participated in a pediatric neuropsychological program tailored for pediatric cardiology patients that was conducted by CHOA and Emory University. Kerrigan is now seven years old and is a thriving, happy girl. She loves singing in the children’s choir at church and dancing in her ballet class!!
Emilee Joy Spencer
In June of 2012, Emilee (then 10 years old) was visiting a friend in Texas when the Polaris Ranger they were riding in overturned, trapping her underneath. Emilee sustained a broken right arm, a kidney injury, a concussion, and a complete crush injury and degloving to her right foot. Emilee was rushed to the nearest hospital, where she was stabilized, but then was sent on a medi-vac jet to OU Medical Center’s Level 1 Trauma Center in Oklahoma City, OK. Emilee was transferred to OU Children’s wing and underwent her first of many surgeries. Nearly every bone had been broken in Emilee’s right foot and the skin had been ripped away. There was a significant chance that Emilee would lose her foot. Emilee had surgery every other day to clean out the foot and try to get as much debris out as possible, but infection set in. She was put on high doses of antibiotics to try and combat the infections. Two and a half weeks after the accident, Emilee’s health went into a rapid decline, and doctors furiously tried to figure out what was going on. In July 2012, Emilee had gone into complete renal failure. The high powered antibiotics, plus other meds in combination with her kidney injury she received in the accident prevented her kidneys from filtering properly, and they shut down. Emilee was once again sent to emergency surgery this time to put a hemo-port in her chest for her to begin dialysis in an attempt to save her life. The dialysis began working, and Emilee’s health slowly began to improve. All total, we spent nearly 6 weeks in the hospital that Summer. By the time that year was over, Emilee had had 11 surgeries. In 2014 we were transferred to Georgia, and Emilee’s foot began to show signs that her graft she received back in 2012 was failing, and she would be in need of a more permanent solution. In January of 2015 Emilee underwent a free tissue transfer and microsurgery to place a full thickness graft from her thigh to her foot. That surgery lasted 8 hours. Emilee spent 2 weeks in the hospital, but the graft took, and the surgery was a success! Emilee now has living tissue on her foot that can expand, contract, grow, and take all the wear and tear a normal 16 year old can give it. To date, Emilee has had 17 surgeries. We do not know when the surgeries will end, but her spirit is unbreakable. Every obstacle put in front of her, she turned into a stepping stone. Emilee continues to enjoy being outdoors and hiking, swimming, rock climbing and hopes to begin track and field soon. We cannot thank Children’s Miracle Network Hospitals enough for what they have done for our girl. In turn, they can’t do what they do best without help from people like you who work tirelessly to raise money for them. From the bottom of our hearts…THANK YOU!!!
Henry was riding his bicycle with his little sister and he drove down our neighbor’s driveway and crashed through the glass windows in her garage door. He had extensive, deep bilateral lacerations extending from inside both hands to his upper arms, slicing them open down to the fascia just and bone. We were in the front yard with our other children playing and talking to neighbors and Chris had just pulled in from work. We saw Henry’s big smile as he rode his bike with his helmet on. Then we heard his screams and ran to him. As we ran, we saw him run to us in shock. With terrified, painful cries his arms were open to us but they didn’t look like his arms any more. The sight is still painful to picture in our minds. He was running to us with his skin and muscle torn apart and hanging off the lengths of both arms and hands - exposed, filleted open and blood everywhere. His extent of injuries were so great and so traumatic, it was something no parent or other young siblings would ever want to see. Friends scooped up our other young children so they would not see the trauma. Chris made tourniquets and we worked to keep Henry awake. Police came. The fire department came. Then the ambulance arrived to rush Henry to CHOA. He suffered nerve and tendon damage. As his surgeon later said, “he is a miracle.” His healing and recovery will take a long time. Thanks to the doctors, nurses and therapists connected with CHOA, Henry is healing beautifully and beyond expectation. CHOA has helped him and his brother and sisters heal from the inside out. Seeing someone you love suffer a tragic circumstance is not something anyone wishes to experience, but having CHOA on the journey makes all the difference.
On 06/01/05 Rick & Shelli James were blessed with the birth of Richard Allen James III (aka Ricky). A beautiful boy with big blue eyes, a head of curls & a smile that just made you want to hug him. On 04/01/07 Ricky was brought to CHOA with severe constipation. Within 4 hours we learned that Ricky had a tumor blocking his rectum & we were going to be admitted that the drs feared a malignancy.Soon, it was confirmed - Ricky has rhabdomyosarcoma. Rhabdo is a form of cancer that attaches to the muscles & in Ricky's case, it is believed that the pelvic mass is stemming from his prostrate. The tumor is about the size of a tennis ball. Ricky is the light in a room. He completed 42 weeks of chemo with 28 treatments of radiation. On 08/08/07 Rick & I were blessed with the birth of our daughter, Erin Michele. Ricky came to the hospital directly from radiation demanding to see "HIS BABY" & she has been his primary source of attention since. On 1/11/08 Ricky received his last chemo, with Erin by his side. On 02/08/08, Ricky was declared NED (No Evidence of Disease). It was a wonderful day. Unfortunately, Ricky's next scans on 5/16/08 showed a mass & our worst fears were concerned....Ricky had a 2-3 cm tumor on the posterior of his prostate. On 05/30/08 Ricky had his port re-inserted & began another 42-52 weeks of more advanced chemo. Radiation was not an option this round. On 10/14/08 Ricky had surgery to remove his bladder, his prostate, surrounding lymph nodes & an extended portion of his urethra. His transverse colon was also removed to create a conduit for his urine. Ricky wears a urostomy bag. He will have an additional 8 cycles of chemo before completing the battle this time around. Ricky's bone marrow tired & we spent most of the last 4 months of treatment in the hospital. On 02/29/08, the last day of his 22nd month of treatment, Ricky received his last chemo. On August 12, 2009, his right lung showed 2 very small lesions. On 9/17, we received the devastating news that Ricky now had at least 14 lesions on both lungs. It was determined that Ricky would receive chemo again. On 10/1, Ricky had his 3rd port inserted & begin chemo, for the 3rd time is his life. The lesions are spreading & multiplying with too many to count. Ricky lost his battle with cancer and earned his angel wings on May 23, 2010. Despite this, the James family has been inspiring students everywhere as they spread the love and story of Ricky.
Beau, a.k.a., the Lil’ Ice Cream Dude, owns and operates his own ice cream cart/trailer business. He started his business in 2012 when he asked for and received a small ice cream cart for his 8th birthday. He worked only three events in the summer of 2012 but he made $308 in one and was determined to make ice cream his career choice. However, Beau’s dreams of building his ice cream empire almost melted away completed in 2013 when he was diagnosed with a severe case of pneumonia and emphysema. Doctors at Scottish Rite Childrens Hospital in Atlanta, Ga worked around the clock to find antibiotics to fight both infections inside and outside of Beau’s lungs. After six weeks of intense hospital stays and being confined to his home, Beau was finally able to return to school and his friends. Beau surprised his parents when he told he felt healthy enough he ice cream business up and running again. Since returning to his business in 2013, Beau has worked over 400 events and served his ice cream to tens of thousands. In February of 2015, he decided he wanted to give back to the hospital and doctors who helped him fight pneumonia. After reaching out to the Scottish Rite Children’s hospital and the Children’s Healthcare of Atlanta, he was introduced to UGA Miracle and Dance Marathon. He was allowed to come to Dance Marathon 2015 to sell his ice cream where he raised $1,000. Since that first DM, Beau and has become an official UGA Miracle child and he returned to DM 2016 and 2017 where he raised $2000 and $2500 respectively. To date Beau has raised over $5500 for Dance Marathon #FTK who have been treated by the best doctors and nurses in the Children’s Healthcare of Atlanta. Although Beau still has small respiratory challenges from his illness, he is thriving and so is his business. In the spring of 2018 Beau opened his first ice cream shop, Lil Ice Cream Dude’s Cool World!
Amber was born with Hypo-plastic Right Heart Syndrome with Pulmonary Atresia. Her first surgery was when she was 5 days old, then 6 months and 2.5 years old. Amber had a cath test the year after and everything checked out wonderfully! Her family is so grateful for CHOA and the work that they do!
On April 30th 2011, Hannah was rushed by ambulance from Lake Oconee to CHOA Egleston campus. She had a broviac central line at the time and it was suspected that she had a line infection. During her 90 minute ambulance trip, her condition worsened to the point that shortly after she arrived at the Egleston ER, she began to crash. Her body had gone into septic shock and a team of doctors and nurses fought to keep her alive. She barely pulled through and was placed in the ICU for the next 10 days which was very touch and go. The team at Egleston was phenomenal with their bedside manner and medical care. Fast forward 2 years, her family moved from Tennessee to the Atlanta area due to military service ending. They made this move because the GI doctor recommended a doctor in Atlanta, and they had such a positive experience at CHOA before. Her family is now at the Scottish Rite campus, and the Scottish Rite family took them in with open arms. They had an extremely rough first year in Georgia with more time in the hospital than out of the hospital. Every visit was such a positive experience to the point that Hannah did not want to go home after her care was over. That is a problem! In fact, she would go visit her friends at the Zone every time she was in the area. They made such a positive impact on her life. The faculty and staff of CHOA should be very proud for the work that they do every day. They have such an impact on everyone’s lives that they touch. It is not just the doctors and nurses either. Everyone in that facility had a major impact on the care for their daughter and the family is extremely grateful for all that they do!
In the summer of 2011, healthy and active 8-year-old Will suffered an unexpected brain hemorrhage and stroke. This tragic event was caused by an arteriovenous malformations (AVM), a congenital condition which his family was unaware he had. After immediately being rushed to Children’s Healthcare of Atlanta, Will underwent an emergency craniotomy to remove part of his skull, which would help relieve the pressure on his brain from the swelling. Doctors then placed him into a medically induced coma for two weeks to give him the best chance of allowing his young body to heal. When he woke, he was temporarily blind and paralyzed and would face a long road to recovery beginning with the Inpatient Rehabilitation Program at Children’s. Will spent seven weeks with his family in the unit relearning how to walk, tie his shoes and other daily activities most kids take for granted. In September 2011, he had one last surgery to remove what was left of the AVM, and later scans revealed he was no longer at risk of bleeding. The 15-year-old is back at school full time, playing basketball and working hard while balancing 10 therapy sessions each week. He is also continuing to make progress regaining the use of his left side as well as the cognitive functions he lost due to the hemorrhage. Will is full of fire and has a determined spirit to persevere in the face of his medical challenges and is an inspiration to his friends, family and community.
While enjoying a beach vacation prior to starting 8th grade, Kate suffered a seizure. Upon returning to Atlanta, an MRI was ordered, which showed a tumor in Kate’s pituitary gland in her brain. Luckily, the tumor had not invaded the optic nerve or else vision would have been impaired. To confirm the tumor type, neurosurgery was performed in October 2010. The tumor was a germinoma. Kate had two rounds of chemotherapy and then six weeks of radiation. Treatment and its side effects meant having to repeat 8th grade. Kate went from being a gifted student to one who needs learning accommodations, but they’ve learned everything is relative. Thankfully, Kate is now in remission. Although Kate’s tumor type has an excellent remission rate, she has total lifelong pituitary failure. The pituitary is the body’s master gland, which controls and produces many of the vital body functions. As a result, Kate takes 14 medications throughout each day. Treatment to her brain caused cognitive issues. During her high school freshman and sophomore years, Kate had to relearn how to learn. Luckily, her brain is healing and results from her high school junior year are strongly rebounding. Kate is a life-long Georgia Tech fan. Ask her to sing the three stanzas of “The Ramblin' Wreck” song to see how much she loves Tech!