Meet the 2018 Speedway Miracle Kids!
The 27th annual Speedway Miracle Tournament gives golfers the opportunity to get to know the Speedway Miracle Kids they are raising funds for in addition to spending time with Speedway’s management team.Each child featured here has been or is a pediatric patient at the Children’s Miracle Network Hospital they represent. All proceeds from the event support Children’s Miracle Network Hospitals in the communities Speedway serves. Here are your 2018 Speedway Miracle Kids!
Adyson Stalder, age 10
Premature birth
Sheena and Andrew Stalder were 20 weeks pregnant with twins when doctors noticed the babies had stopped growing. Sheena was admitted to the WVU Medicine Children’s Maternal Infant Care Center and put on bed rest. After two months, there were still no signs of growth. Isabella and Adyson were born 27 weeks gestation, weighing only 15 and 13 ounces.
The Stalders were told that the girls would most likely not survive the birth due to respiratory problems and to the fact that the hospitals’ instruments were too large to be used on the girls. However, the staff figured out a way to make the tools work, and the girls lived. Unfortunately, after 19 days, things became too hard on Isabella, and she passed away.
Luckily, that same devoted care kept Adyson alive. She was on a ventilator for 118 days in the Neonatal Intensive Care Unit. In addition to her tiny size, Adyson had to overcome respiratory distress syndrome, feeding problems, surgery for twisted bowel, infections, acid reflux, low blood pressure, pulmonary hypertension, apnea, and chronic lung changes. She went home on oxygen and a heart monitor.
Today Adyson is a very healthy, active 10 year old. She LOVES softball, hunting with her daddy, dancing. She’s also a Girl Scout, attends bible class, loves working with her fair calves, and playing with her dogs and chickens.
Sponsored by:
Alex Hilgeford, age 16
Popliteal pterygium syndrome
Alex was born with a rare, genetic condition called Popliteal Pterygium Syndrome. The most obvious sign was significant webbing on the back of his right leg, which prevented him from straightening the limb. Webbing also was visible on Alex’s left leg, and he had multiple issues inside his mouth as well—his tongue was attached to the roof of his mouth, fibrous bands prevented him from opening his mouth and he had a posterior cleft palate. The doctor painted a gloomy picture of the many problems Alex could face in the next few weeks and long term. That night, Alex was transported from the hospital where he was born to the Dayton Children’s Regional Level III neonatal intensive care unit (NICU). His parents, Drew and Mindy, spent anxious hours worrying about the future, but by the next day, their outlook changed.
Alex was seven when his leg was amputated above the knee, and within a few months he was fitted with his first prosthetic leg. As he grows—and outgrows his prosthetic—Alex is fitted with a new leg he calls Fred.
Sponsored by:
Allison Kurtz, age 18
Polycystic kidney disease (PKD)
When she was just 6, Allison was diagnosed with polycystic kidney disease (PKD) – an inherited disorder in which clusters of cysts develop, causing the kidneys to enlarge and lose function over time. The cysts can grow very large, damaging not only the kidneys but also the liver and other organs. They can cause serious complications, including high blood pressure and kidney failure. There is no cure for PKD, so it’s highly likely that Allison will need a kidney transplant as an adult.
Allison was also diagnosed with sensory processing disorder when she was in 2nd grade. Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.
Born male, in July 2016, Allison began a new journey in her life and turned to the renowned experts at the Transgender Clinic at Cincinnati Children’s. This multidisciplinary clinic addresses the needs of teens coping with gender dysphoria and brings together a team of experts in psychiatry, psychology, endocrinology, pediatric gynecology and more.
Allison has suffered from gender dysphoria most of her life, resulting in depression, anxiety and suicidal thoughts. She began medically transitioning to female with the help of experts last November and her care team is working closely to improve her kidney function during her transition.
Allison is not afraid to live her life as her true self and encourages everyone to do the same. She has a wonderful circle of friends and family who support and love her, including her two brothers who are her best friends and biggest advocates.
Allison loves playing video games, listening to music and creative writing. She’s a very talented artist with a bright future and plans to study art or graphic design in college.
Sponsored by:
Benjamin Burke, age 9
T-cell acute lymphoblastic leukemia
Benjamin’s cancer treatment began with nine months of intense chemotherapy via IV and weekly visits to monitor his cell count. In September 2016, he moved to a “maintenance” phase, which includes daily chemotherapy pills, weekly antibiotics and monthly clinic visits for IV chemotherapy. Since then he’s gained weight, his hair has grown back and he’s happily rejoined his classmates at school.
Benjamin loves all things sports-related, so when one of his sports heroes – Chicago Cubs first baseman Anthony Rizzo – visited the hospital, it was a major highlight. Benjamin and his family now help kids just like him by fundraising for cancer research.
Sponsored by:
Brock Roy, age 8
T-cell acute lymphoblastic leukemia
Children’s Hospital of Pittsburgh
Brock developed swollen lymph nodes in July 2017 at the age of 7. He was diagnosed last August with T cell Acute Lymphoblastic Leukemia. He is currently being followed by Children’s Hospital of Pittsburgh of UPMC’s Oncology group, Dr. Friehling and Dr. Stanley. Brock has endured so much in the last 6 months of chemotherapy and the physicians, nurses and all other staff at the hospital have been phenomenal. His parents say that everyone they encounter is very professional and knowledgeable. And always strive to make Brock feel as comfortable as possible.
Brock’s parents feel very confident in the nursing staff and physicians they work with at the hospital. On Brock’s last day of inpatient chemotherapy, the staff had a good-bye celebration where they lined up in the hallway and blew whistles and cheered for Brock as he was getting ready to leave. The doctors, nurses and all available staff participated and it was such a wonderful experience. It made Brock’s parents feel like they are kicking cancer’s butt and there is a light at the end of the tunnel. Brock will finish his final chemotherapy in Dec 2020, when he will be 10 years old.
Sponsored by:
Brody Simoncini, age 6
Omphalocele
When Brody’s mother Maureen was 18 weeks pregnant, she and Brody’s father Kenny went in for a routine ultrasound. They were excited to find out if Maureen was carrying a boy or a girl, but they found out much more than that. The ultrasound revealed that Maureen was having a boy, but that he would be born with a serious medical condition called Omphalocele.
Omphalocele is a birth defect where the baby’s intestine or other organs stick out of the belly button. In many cases only a thin layer of tissue covers the intestines. Once it was established that Brody had an Omphalocele, his parents were transferred to a doctor who specialized in high-risk pregnancies at their local hospital. No matter how grim the news was, Maureen and Kenny said they were going to have the baby no matter what – termination simply wasn’t an option.
Brody was born at Brigham & Women’s Hospital with several birth defects. Right after his birth, he was transferred to Boston Children’s so the doctors there could begin his treatment. Like many babies born with an Omphalocele, Brody had several other medical concerns that needed treatment, some of them far more serious than the Omphalocele itself.
By four months old, Brody had undergone more medical procedures than most people will face their entire lives, but he wasn’t in the clear yet. For seven and a half months, Boston Children’s was their home while an entire medical team looked after Brody, correcting his birth defects one at a time, waiting until he was healthy enough to have his Omphalocele fixed. Brody spent weeks and weeks healing, but 233 days after his birth, he went home and his family was finally together under one roof!
Sponsored by:
Caden Capitani, age 12
Down syndrome
PennState Health Children’s Hospital
Caden means “Fighting Spirit” in Gaelic – a perfect name for a boy who has been facing challenges since before he was born. Diagnosed with Down Syndrome and 16 other ailments, Caden has taken up to nine medicines daily since birth. His journey has involved multiple specialists from nearly every area of Penn State Children’s Hospital.
Through his love of music and superheroes, Caden does everything he can to bring joy to others. He relates so well with his classroom peers that they often seek his help with his special talent — video games!
Children’s Miracle Network Hospitals provides funding for research, equipment and patient programs like Child Life, which has supported Caden’s developmental, educational and therapeutic needs as he grows.
Sponsored by:
Chase Graham, age 8
Autism, gastroesophageal reflux disease, right-sided hemiparesis
Vanderbilt Children’s Hospital
Chase was born into less-than-desirable circumstances and was immediately transported to Monroe Carell Jr. Children’s Hospital at Vanderbilt where he required ECMO, a heart and lung bypass machine. After being discharged, he was diagnosed with Respiratory Syncytial Virus (RSV) and returned back to the hospital not breathing. In his short life, Chase has spent more than 150 nights at Children’s Hospital at Vanderbilt– at least 35 of those in the Pediatric Critical Care Unit.
Chase met his forever family when he was 7 weeks old. He has been diagnosed with Autism, Immunodeficiency, a seizure disorder, three airway abnormalities, severe Gastroesophageal Reflux Disease and Right-Sided Hemiparesis. Chase uses a gastrostomy tube to help him eat and breathe at the same time. He loves playing Minecraft, making gadgets and creating artwork.
Sponsored by:
Alex & Chloe Swann, ages 8 and 7
Cerebral Palsy, para infectious encephalopathy and premature birth, autism
Chloe was born with a Cytoma Tumor in her head and has recently been diagnosed with Para Infectious Encephalopathy (a spinal cord infection running to her head) that causes seizures, change of personality, cognitive difficulties and memory loss. She has been in speech and OT and PT since 18 months old and has had many specialists that see her. Chloe also has Cerebral Palsy that affects her auditory and visual memory.
Despite her challenges, Chloe loves kindergarten and has a firecracker personality that lights up a room! She is in love with Adam Levine from Maroon 5. She lives, eats, sleeps, and breathes music, and performed Adam Levine ‘Sugar’ at her recital in February.
Alex was born 2 months early and was in the NICU at Beaumont Children’s Royal Oak for 2 weeks. He was a preemie who had feeding and breathing issues and also had a condition called Torticollis (kink in his neck to make him only lay one way, also a misshaped head) where he had to have a molding helmet to help reshape his head.
At 18 months, Alex couldn’t put many words together and needed speech and PT along with OT for sensory issues. He thrived in all the right places except for food. He still struggles with foods and drinks. Alex’s team of doctors from Beaumont Children’s includes neurologists, neuro muscular, PMR (physical medicine and rehab), cardiologist, immunologist, and many more!
Alex is autistic and is very shy and quiet until he gets comfortable with you. Despite his challenges, he loves second grade and Minecraft or Pokemon, which if you start a conversation with him about, may get him to open up to you.
Sponsored by:
Ciarlo Liples, age 7
Spina bifida
Children’s Hospital of Philadelphia
Despite being born with a severe form of Spina Bifida, having surgery at just 21 hours old and a shut placed in his brain at two weeks old, Ciarlo – who is paralyzed from the waist down – has a personality that brightens every room. In fact, he’s been nicknamed “The Mayor” because of his outgoing, cheerful demeanor.
It’s an outlook that means everything for his family, who has dealt with so much. In 2016, Ciarlo’s older brother Dominic, lost his battle to brain cancer. Thankfully, Ciarlo continues to bring his unique brand of joy to everyone he meets. He’s proud of his accomplishments and loves telling people that his first word was “stethoscope.”
Sponsored by:
Daniel Tomanelli, age 14
Struck by a car
Children’s Hospital at Erlanger
On December 3, 2016, Daniel was getting out of vehicle in a parking lot when a car drove off the road and struck him at 53 mph. He was thrown into a wall by the impact, leaving extensive injuries throughout his body. His lung collapsed and he couldn’t breathe due to extensive bleeding and trauma to his airway.
A CT scan at Children’s Hospital at Erlanger showed life threatening injuries including fractures in his skull, jaw, clavicle, face, elbow, hip socket, pelvis, and mouth trauma. Additionally, Daniel’s spleen was ruptured causing internal bleeding along with a traumatic brain bleed.
Over the next few months, Daniel went through countless surgeries on his long journey to recovery and spent numerous months after that in physical therapy and homebound school services. Through it all, he persevered and graduated along with his eighth grade class in May 2017!
As of August 2017, Daniel returned to his full time school schedule. He loves music and continues to practice his hobbies of playing guitar and piano. He is looking forward to skating and surfing again soon. His mother praises Children’s Hospital at Erlanger and says they are so grateful for each staff member that saved her son’s life. She says Daniel is a true miracle and inspiration to many!
Sponsored by:
Donnavan Crawford, age 10
Type 1 diabetes
Last February, Donnavan arrived at Riley Hospital for Children in Indianapolis, Indiana, with blood sugar levels over 800. Riley physicians diagnosed him with type 1 diabetes and helped him learn to manage his condition. The outgoing 10-year-old enjoys reading, singing and playing video games. He is particularly grateful to his Child Life Specialists for giving him time to play while he is in the hospital.
Sponsored by:
Elizabeth Street, age 10
Third-degree burns
Elizabeth sustained third-degree burns on her cheek from a lightbulb when she was 2-and-a-half years old. She spent 11 days in the Speedway Burn Center at Riley Hospital for Children in Indianapolis, Indiana, and has undergone multiple surgeries since then. Today, the 10-year-old loves books, music and spending time with her family and friends. The family takes advantage of every opportunity to give back to Riley in honor of Elizabeth, who they call “a positive light that beams.”
Sponsored by:
Emma Grace Barnes, age 15
Arteriovenous malformation (AVM)
Emma Grace’s journey at Levine Children’s Hospital began shortly after her ninth birthday in July, 2011. She developed a sudden severe headache, began vomiting and could not move her neck. When she first arrived at LCH through the pediatric emergency room, the spinal tap revealed blood in her spinal fluid which led to a CT scan that then revealed an AVM (arteriovenous malformation) in her frontal lobe that had hemorrhaged. It also revealed another AVM in her occipital lobe that had previously hemorrhaged. AVM’s affect less than 1 percent of the population.
Emma Grace was immediately moved to the ICU where she underwent several procedures including an angiogram and an embolization. After these procedures, Emma Grace had a full craniotomy to remove the AVM. One piece of the AVM was inoperable, so three months later she underwent radiation to the brain with the hope of the radiation removing the remaining piece of the AVM. After her craniotomy, Emma Grace was involved in physical therapy, speech therapy and occupational therapy both inpatient and outpatient through LCH. She had to focus on basic skills like walking, eating with utensils, and tying her shoes.
Because of the hemorrhage and the surgery, Emma Grace really struggled with short-term and long-term memory. She participated in therapy for over a year and a half, which eventually helped her regain equal strength on both sides of her body. While she still struggles with memory loss, she has made considerable progress in this area. While Emma Grace was in the hospital, LCH Child Life Specialists went and talked with her 4th grade classmates to help them better understand what happened to her. They even brought a stuffed monkey to sit in her chair at school while she was out. LCH coordinated her homebound services and after two full years of being either homebound or on a modified day, Emma Grace finally worked her way back to a full day of school.
Because of her experiences at LCH, Emma Grace has been passionate about giving back to the hospital and is considering a career in pediatric medicine or nursing. She is currently a member of the Teen Advisory Council and is an active member of her school’s HOSA club (Health Occupation Students of America). She volunteers her time with numerous organizations and coordinates a blood drive, where she can give back. While life is a new normal and she will continue to be checked for AVM regrowth over the next ten years, her story is an amazing one and she truly is a miracle.
Sponsored by:
Graylyn Echenique, age 2
Heart defect & Cauda Equina syndrome
Helen DeVos Children’s Hospital
On May 16, 2016, Graylyn entered the world with a heart defect. Immediately after she was born, neonatal intensive care staff whisked her away. At 8 days old, she underwent a surgery by a congenital cardiothoracic surgeon who inserted a bovine heart valve into her tiny chest cavity. In September, at 4 months old, she returned for a second heart surgery to repair her aorta. In addition to the heart defects, she was diagnosed with Cauda Equina Syndrome, a rare condition of extreme swelling of the nerves at the end of the spinal cord. The Cauda Equina is responsible for motor movement in the lower limbs.
Graylyn has been making steady strides, gaining more control of her legs, with weekly physical and occupational therapy through Helen DeVos Children’s Hospital Rehabilitation staff. While she is showing progress, there will be more heart surgeries in Graylyn’s future. Her mother says they don’t know when and that it is frustrating and hard at times. She also says it’s important to remember that Graylyn is still here with them and that they keep going on and hoping for the best.
Sponsored by:
Isabel Rita, age 4
Ganglioglioma
Children’s Specialized Hospital
Isabel is sometimes known as “Izzy Warrior Princess.” When you hear her story, you know why. This joyful little girl has a rare spinal cord tumor known as Ganglioglioma, which is intertwined with her spinal cord, making it difficult to remove surgically.
At just 2 years old, Izzy completed 42 rounds of chemotherapy to reduce the size of the tumor. Alongside chemotherapy, she started physical and occupational therapies at Children’s Specialized Hospital. Her progress at CSH has been remarkable, as she continues to dedicate herself to growing stronger and achieving anything she puts her mind to! At 4 years old, Izzy turns everything into a game, making her continued physical therapy easier to bear, and absolutely loving everything music—from singing to dancing to performing!
Sponsored by:
Jace Bowling, age 7
Congenital heart defect
Children’s Hospital of Wisconsin
Jace was diagnosed with a congenital heart defect when he was 6 weeks old. At a wellness checkup, his pediatrician heard a faint murmur and had images taken of Jace’s heart. The images revealed that his heart was enlarged. His pediatrician immediately sent Jace and his parents to Children’s Hospital of Wisconsin in Milwaukee.
Jace was then diagnosed with an AV Canal. The decision was then made that Jace would require heart surgery. He had heart surgery on February 17, 2011, when he was just 1 day over 2 months old. His surgery was successful, but during recovery, Jace struggled with eating on his own and had to have a second surgery to put a G-tube in. After this surgery, things began to slowly improve. He started to put on more weight and after 6 weeks, he was finally able to go home!
Over the next 20 months, Jace continued with speech, physical and occupational therapies. He had regular checkups with his GI and Cardiac team at Children’s. In November of 2012, Jace had his G-tube removed and that was a BIG day for him and his family!
Today, Jace is a STRONG and busy 7 year old. He continues to go back to Children’s for annual checkups with his cardiologist.
Sponsored by:
Jack Wells, age 6
Hypoplastic left heart syndrome
Jack was born January 10, 2012 to his parents Brandon and Jenny and a sister, Maddie. The pregnancy was as perfect as could be but once Jenny’s water broke at 38 weeks, problems started to arise. The family rushed to the hospital and got hooked up to everything but Jack struggled with every contraction until the OB/GYN was called in.
After many failed attempts to prevent having a Caesarean section, Jenny was rushed to the OR to get Jack out, who was obviously in distress. Once he was born, the doctors knew something was wrong with his heart and he was sent to Kentucky Children’s Hospital. He was diagnosed with HLHS, Hypoplastic Left Heart Syndrome, and at 8 days old had his first open heart surgery.
Jack had a g-tube and nissen placed when he was 6 months old due to the failure to thrive, which delayed his second stage of surgery that was to take place when he was just a couple months old. The wait was worth it because the undeveloped side of his heart miraculously grew and Dr Schneider, his cardiologist, suggested the family make the trip to Nationwide Children’s Hospital in Columbus, Ohio to meet a CT surgeon that could do the best surgery for Jack.
At 13 months old, Jack had his second open heart surgery. It was definitely a roller coaster ride but to this day has been very successful! He has trouble with a leaky feeding tube, has had a broken arm and has learning delays, but to his family – those are minor! Jack likes sports, cars and trucks, dirt and mud, and being outside regardless of the weather.
Sponsored by:
Jackson Wall, age 7
Pulmonary arterial hypertension
When Jackson was only 14 months old, doctors at Duke Children’s diagnosed him with Pulmonary Arterial Hypertension – a chronic, progressive and life threatening lung disease that currently has no cure. His narrowed arteries make it hard for Jackson’s heart to pump blood to his lungs. To help, Jackson receives medication subcutaneously 24/7 via a pump and a site in his arm or back.
Jackson makes regular visits to Duke Children’s for echocardiograms, lab work, and emergency services to limit the progression of his disease as much as possible but he doesn’t let his condition slow him down! He has an orange belt in karate, loves watching football (especially the Cowboys and the Panthers) and is an honorary member of the Duke Men’s soccer team.
Sponsored by:
Kallie Lewis, age 3
Down syndrome
Kallie was born with Down Syndrome, along with multiple medical conditions and has been hospitalized at Mercy Health – Children’s Hospital many times in her short three years. At two days old, she had emergency surgery to place a colostomy. Her parents had planned to spend months in the NICU, but the amazing Mercy NICU nurses had other plans for Kallie. They taught her parents how to care for her colostomy, what to watch for when it came to her heart and also how to place a feeding tube, as she would be going home with one.
Within 16 days, Kallie was released from the NICU and got to go home. She has spent most of her life in and out of the hospital because of her illness and has had 19 surgeries. Although she has had many stays at Mercy Health – Children’s Hospital, Kallie has always come out stronger than ever and the family says they owe that to the doctors and nurses at who care for her as if she was their own.
Sponsored by:
Carson & Kendall Shields, age 9
Premature births
Arnold Palmer Hospital for Children
Twins Kendall and Carson are honor roll students who love playing sports and spending time with friends. When their mother went into labor 20 weeks early with them, it was hard to imagine ever celebrating their birthday, let alone their ninth birthday, which they did this year. Thankfully, doctors at Arnold Palmer Medical Center were able to delay her delivery for an additional six weeks, giving Kendall and Carson a better chance to thrive outside of the womb.
Once born, the twins were immediately placed on life support and faced many obstacles, including brain hemorrhages and chronic lung disease. Carson even had a shunt placed in his brain to relieve building pressure.
Today, Kendall and Carson are thriving thanks to the amazing medical care and rehabilitative services they received at Arnold Palmer Hospital for Children. Their parents are grateful they had access to a specialized hospital when their kids needed it most!
Sponsored by:
Lexi Gurka, age 8
B-cell Lymphoblastic lymphoma
Bernard & Millie Duker Children’s Hospital
In 2013, Lexi’s parents, Jodie and Tom, noticed bruising on her body that wouldn’t go away. They took her to the doctor for tests and then received the call that would forever change their lives. Their daughter had B-cell Lymphoblastic Lymphoma.
The very next day Lexi and her family were at the Melodies Center for Childhood Cancer and Blood Disorders at the Bernard & Millie Duker Children’s Hospital at Albany Med beginning their two-and-a-half year journey of chemotherapy, blood transfusions and hospital stays.
Through those trying times, it was Lexi’s love of music and dancing that gave her the strength and determination to soldier on, as did the staff at the Melodies Center whom Lexi and her parents consider “family.” Lexi, now 8, has been in remission since 2016 and is a happy, social little girl in second grade.
Sponsored by:
Logan & Lennon Heck, age 5
Premature birth
Johns Hopkins All Children’s Hospital
Logan and Lennon Heck are fraternal twins who were born 7 weeks early, weighing in at 5 pounds each. After delivery, they required a 21-day stay in the Neonatal Intensive Care Unit, where Lennon received special lung treatments and Logan received monitoring and light therapy for jaundice. Both boys required feeding tubes and IVs until they learned how to eat on their own. After their NICU residency, they had outpatient surgeries when an identical urological problem was discovered around age 2.
Around Logan’s 3rd birthday, a significant speech delay was observed. The audiology team at John’s Hopkins All Children’s conducted tests, and determined he suffered nerve damage in his left ear that caused hearing loss. Logan now wears his “magic ear” proudly, and his confidence in his treatment and love for the hospital is a testament to the quality of care he receives there.
Sponsored by:
Luci Cichocki, age 3
Burkitt lymphoma
Luci had flu-like symptoms for several days and appeared to have a bowel blockage of some sort. Her pediatrician advised Luci’s parents that she needed an x-ray and they were to take her so Sparrow Children’s Center. The x-ray confirmed a blockage, but a CT scan revealed a parents’ worst nightmare – Luci had masses in her abdomen and “spots” on her liver. While her parents tried to remain optimistic about a potential diagnosis, their minds were stuck on the possibility that their precious daughter had cancer.
While it took time for an official diagnosis, Luci’s doctor, Dr. Gera, and nurse practitioner Cheri Salazar, were confident that we were dealing with Burkitt Lymphoma. The family’s world was immediately flipped upside down. Their sweet little girl, who seemed perfectly healthy and happy a week before, was facing the fight of her life. Luci’s parents also found out a month prior to Luci’s cancer diagnosis, that we were expecting their third child. They were now trying to keep things “normal” for their almost five-year-old son, Abe, along with being present for the beginning of Luci’s chemotherapy treatment.
Dr. Gera recommended beginning treatment right away, as Burkitt is an incredibly aggressive type of cancer. Luci and her family spent their first four days at Sparrow in the PICU. Two of those days, Luci was intubated and sedated. When Luci was well enough, she was moved to the main pediatric floor where she would spend a majority of the next three months. She endured five rounds of intense and aggressive inpatient chemotherapy that included regular lumbar punctures and scans to chart the progress. There were times throughout her treatment that Luci was extremely ill, but through it all she never lost her spirit or spunk! In fact, she developed quite a reputation on the Peds floor for being a somewhat sassy three-year-old who asked a lot of questions and enjoyed being hands-on with her treatment.
Luci was finally discharged from the hospital on October 14th, for what her parents hope and pray will be the last time. The follow-up care Luci will need involves labs, infusions and scans. Her mother Whitney cannot reiterate how thankful they are to Sparrow and its wonderful staff. She says that the Sparrow staff will forever be part of their family.
Sponsored by:
Makenzie Nance, age 14
Sickle cell anemia
UH Rainbow Babies and Children’s Hospital in Cleveland
Like every newborn, during her newborn screening, Makenzie was tested for Sickle Cell Anemia. This is when her journey began. Sickle Cell Disease, prevalent in the African American community, is an inherited blood disorder which can cause Makenzie to tire easily and have recurrent, debilitating pain.
For the last six years, numerous blood drives have been held in Makenzie’s honor at her church to help her and others overcome the struggles associated with the disease. The blood drives have produced a record number of donors from the African American community in Cleveland.
Makenzie has become a witty, outgoing, and adventurous young lady not allowing Sickle Cell to limit her. She plans to become a pediatric nurse and help children who have Sickle Cell.
With the help of UH Rainbow Babies & Children’s Hematology Team, Makenzie is enjoying life to the fullest, as any child should.
Sponsored by:
Max Krempasky, age 10
Spinal injury
Few people survive the kind of spinal injuries that Max Krempasky suffered in November 2015. Those who do typically don’t walk again. And they certainly don’t go rock climbing and play baseball. But that’s exactly what Max is doing today.
Max, now 10, was riding an all-terrain vehicle (ATV) with a friend when he got distracted and accidentally crashed into a tree. The impact tipped over the 1,200-pound vehicle, which landed on top of him, fracturing his jaw and fracturing and dislocating two vertebrae in his spine. Within minutes Max’s mom, Michelle, and sister, Taylor, rushed to Max’s side. With the help of Max’s friends, they lifted the ATV off of Max, who wasn’t breathing.
Paramedics arrived and immobilized his head and neck, and a CareFlight crew rushed him to Dayton Children’s. There, multiple surgeons and specialists took over his care. Max’s most serious injury was to his neck. He had suffered an atlanto-occipital dissociation — in layman’s terms, an internal decapitation. This meant that the ligaments in his neck that attach the skull to the spine were severed. “It is a miracle that Max survived,” says Patricia Abboud, MD, one of Max’s pediatric intensivists. “Patients who suffer this type of injury usually die or suffer significant, long-term neurological consequences, similar to the type of injury Christopher Reeves suffered after his tragic horseback riding accident.”
Max spent most of his hospital stay in the pediatric intensive care unit, where caring physicians, nurses and therapists helped him regain skills such as sitting up and walking. Despite his extensive injuries, Max was able to go home five weeks after the accident, just two days before Christmas 2015. He returned to school four months after the accident. Today, the only signs of his injuries are a slight speech impediment and stiffness in his neck.
Memories of Max’s accident are not easy to forget, but Michelle still smiles when she thinks about the care that her son received at Dayton Children’s. “The entire staff was so supportive of not only Max, but also of our entire family,” she says. “He couldn’t have made this type of incredible (recovery) progress without a strong will to live and the incredible care team at Dayton Children’s that saved his life.”
Sponsored by:
Miracle Mack, age 4
Premature birth
When Miracle was born, she was given only a 2 percent chance of survival. She was born 18 weeks early and weighed only 14 ounces. The challenges she had to overcome in the neonatal intensive care unit were overwhelming and seemed endless. She suffered convulsions, chronic lung disease, jaundice, underactive thyroid and poor muscle tone, just to name of few.
Miracle’s fighting spirit, combined with excellent medical care and her family’s endless support, resulted in her overcoming every hurdle and then some. Her parents led the charge, believing in their baby’s progress and convincing the medical team by their faith. This now healthy, happy 4-year-old is truly a “Miracle”.
Sponsored by:
Olivia Cacchio, age 9
Twin to twin transfusion syndrome (TTTS)
Nationwide Children’s Hospital
Olivia is an identical twin. She and her twin sister were born with Twin to Twin Transfusion Syndrome, which is a rare disease of the placenta in identical twins that causes one twin to be the “donor twin” and have decreased blood volume throughout their mother’s pregnancy. Olivia was the donor twin.
Because of this, Olivia was born with only half of her left arm. Due to a vascular disruption and lack of necessary blood flow, her arm just stopped growing. She and her sister were monitored very closely during the rest of the pregnancy.
Just a week after Olivia and her sister were born 7 weeks early, it was confirmed Olivia had Necrotizing Enterocolitis (NEC) – which is where portions of the intestine tissue begins to die off. She wasn’t growing as quickly as her twin, who was able to come home after just 3 weeks in the NICU. 40% of Olivia’s colon was damaged and needed to be removed. She endured a 10 week stay at the hospital post-surgery while she fought to recover. She also experienced hearing loss and received her first set of hearing aids at just 6 months old.
Olivia’s been a fighter since day one. Her conditions don’t stop her at all for doing what she loves and being a happy, energetic 9-year-old. She has a prosthetic helper arm with interchangeable attachments that she uses for gymnastics and when she’s riding her bike.
Sponsored by:
Ralphie Espinosa, age 9
Meconium aspiration
Just a day after being born, Ralphie was rushed to Nicklaus Children’s unable to breathe on his own. His doctors tried various methods to help him start breathing, but nothing they tried was successful. It was at Nicklaus Children’s Hospital – one of the few hospitals in the region at the time that had an Extracorporeal Membrane Oxygenation (ECMO) program for pediatric patients – where Ralphie was able to receive the critical care he needed. The machine functioned as his heart and lungs for 60 hours as he grew stronger. Thanks to the advanced technology offered by the PICU team at Nicklaus Children’s Hospital, today Ralphie is a healthy, happy nine-year-old boy.
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Riley Klim, age 14
Nephrotic syndrome
Shawn Jenkins Children’s Hospital
At 22 months, Riley was diagnosed with Nephrotic Syndrome – also known as minimal change disease, which is scarring in scattered regions of the kidney. Riley has spent lots of time at the MUSC Shawn Jenkins Children’s Hospital, averaging about four to six times per year.
Riley has a wonderful spirit and he makes everyone he comes in contact with smile. He is also a part of the Children’s Advisory Board for the new MUSC Shawn Jenkins Children’s Hospital where he is able to give his opinion about the hospital room designs and many other things pertaining to the care of the children in the new hospital.
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Spencer Beal, age 9
Achondroplasia dwarfism
At five months old, Spencer experienced a terrifying episode when he stopped breathing in his car seat while pulling into the hospital parking deck for a previously scheduled appointment. It was then discovered that Spencer was suffering from Central Apena, a complication due to his form of Dwarfism called Achondroplasia. Had it not been for their proximity to the hospital and the quick response of the hospital staff, Spencer may not be with us today.
This visit would mark the first of over ten surgeries Spencer would undergo, including neurosurgery and complex surgeries on his legs, ears and eyes.
Spencer continues to remain positive and inspire everyone he meets. “My Dwarfism doesn’t make me who I am. Once you overcome the hard parts, it’s okay. I really don’t think about it, I’m just me,” he says.
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Adryana & Paul Jr. Navarro, ages 8 and 14
Spina bifida, hydrocephalus
Cohen Children’s Medical Center
Parents-to-be Karen and Paul received the news that there was fluid in the baby’s brain (Hydrocephalus) at her last sonogram, a week before she was about to give birth. Paul Jr. was born with spina bifida, neurogenic bladder and club feet. The doctors advised that he probably wouldn’t walk and he had surgery the next day for closure of Myelomeningocele, the most severe form of spina bifida. A few days later Paul had surgery to place a shunt for the Hydrocephalus and spent 10 days in the NICU. He also had surgeries to straighten his feet out. Paul Jr. began walking just before his 4th birthday. He’s had approximately 69 surgeries in his short life.
History unfortunately does repeat itself. Because of the history with Paul Jr., Karen received a high-risk sonogram at 5 months pregnant with Adryana and learned that she had all the same things her brother was born with; Hydrocephalus, spina bifida, neurogenic bladder and club feet. Adryana also had hip dysplasia which meant that her legs did not move at all from the waist down. After her birth, Adryana had surgery the next day for closure of Myelomeningocele, a sac of fluid formed at the opening in the spine due to the spina bifida, and a few days later for shunt placement. A few weeks she was moving her waist and her legs. Adryanna has had a total of 14 surgeries, but she does not let her inability to walk stop her from doing anything she wants to do.
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Thor Forte, age 7
Sickle cell anemia
Even though he is only 7 years old, Thor has already undergone many blood transfusions. He has Sickle Cell Anemia, a painful condition that reduces the blood’s ability to carry oxygen. As a result, Thor experiences the sensation of pins or razors in his joints when the disease flares up within him.
He comes to Maynard Children’s Hospital once a month for transfusions. Despite his initial fear, the bright surroundings at Maynard Children’s Hospital’s Pediatric Day Medical Unit help him feel comfortable and safe.
He is happy and playful and understands that sometimes he must take it easy. Although his immune system is compromised, he has avoided long hospital stays and takes medication to prevent infections.
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Tristen Luken, age 17
Macrodactyl
Tristen was born with Macrodactyl, a condition which disfigured her right foot. She began seeing Dr. Albert at Dayton Children’s Hospital and had five surgeries by 5th grade. But when the chronic pain would not go away, Tristen decided it was time for amputation.
Today, Tristen walks proudly with her tie-dyed prosthetic leg. Despite all that she has been through, Tristen says she has gained more than she has lost and loves standing out in everything she does!
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Wyatt Boucher, age 6
Mitochondrial disease
At the age of two, Wyatt was diagnosed with a rare and life threatening metabolic condition known as Mitochondrial Disease. This disease causes seizures and interferes with his breathing, among other issues. Wyatt has braved several surgeries throughout his six years. Due to his strict regimen of daily medications and the support of nineteen specialists, Wyatt is able to walk, talk, attend school, and enjoy life with his family.
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