Meet the 2017 Speedway Miracle Kids!

Each child featured here has been or is a pediatric patient at the Children’s Miracle Network Hospital they represent. The 26th annual Speedway Miracle Tournament allows golfers the opportunity to get to know the children they are raising funds for in addition to spending time with Speedway’s management team. All proceeds from the event support Children’s Miracle Network Hospitals in the communities Speedway serves. Here are your 2017 Speedway Miracle Kids!

Elizabeth
Elizabeth suffered a stroke before she was born. No one knew until her parents, Tim and Laura, noticed troubling symptoms and took her to Akron Children’s Hospital. At 6 months old, Elizabeth’s leg muscles would contract and become stiff, her left hand would clench shut, and her left eyelid would droop. Doctors diagnosed her with a perinatal stroke. But the diagnosis doesn’t stop the 13 year old from doing anything she puts her mind to. Akron Children’s Hospital has been with her through multiple surgeries, physical and occupational therapy and re-learning how to walk–twice. “She wouldn’t be where she is today without Akron Children’s,” says Laura. “Our doctors, surgeons, nurses and therapists, they’re all part of our extended family.” Today, Elizabeth is an active girl who especially enjoys swimming and flag twirling. “We like to tell her that if you can’t do it the way everyone else does, find another way,” says Laura. “She always does.”

 

Tori
In 2014, Tori of Colonie, NY, experienced pain in her leg and noticed a bump after getting hurt on the playground. The pain was persistent, and she began to limp. An x-ray quickly revealed that Tori had a tumor, specifically, osteosarcoma, a form of bone cancer. Tori was referred to Dr. Matthew DiCaprio, the only orthopaedic oncologist in upstate New York. From that point on, “everything went super-fast,” Tori’s mother, Erika, said. A biopsy was performed the week after the initial appointment with Dr. DiCaprio, and treatment began the following week. Tori received her last cancer treatment in May, 2015, and scans and blood work continue to look good. Erika says that her daughter has always remained positive throughout her journey. She smiled as much as she could, never complained and was never depressed. “She taught me a lot,” Erika said. Tori, now 11, is in fifth grade, loves spending time with her family and friends, playing basketball and swimming.

 

Addison
When five-year-old Addison fainted for the second time, local doctors sent her to Boston Children’s Hospital. Within hours, Addison’s new doctors discovered a rare heart defect and planned her open-heart surgery. Now, Addison has a happy heart—and a new ambition: to be a vet that mends the hearts of exotic animals—like elephants, her favorite.

 

Jensen
Jensen arrived at WVU Medicine Children’s hospital at just under 28 weeks gestation and weighing only two pounds and three ounces. His lungs were not able to develop properly and he received a tracheostomy to assist his breathing and a gastrostomy tube to help with feeding. Due to his extreme prematurity and lung and breathing complications, Jensen was in the Neonatal Intensive Care Unit at WVU Medicine Children’s hospital for the first 15 months of his life.

 

Mikey
At the beginning of 6th grade, Mikey came home from school with what looked like a regular case of pink eye. Two days later, he woke up unable to see or open his eyes. The doctors at Levine’s Children’s Hospital diagnosed him with uveitis, a rare inflammation of the uvea that can cause blindness. After three years of monthly hospital infusions, Mikey’s condition is now in remission. Although he no longer plays baseball or basketball, he has stayed positive throughout this entire ordeal. He volunteers at Take On Sports as his outlet to help kids with challenges even greater than his own. When you meet this Miracle Kid, you realize that he is something special–always making you smile and encouraging others in everyday events.

 

Rylan
Rylan’s story has been a long journey of the͞ unknown. Since birth, Rylan has experienced many developmental delays that simply could not have been pinpointed for most of his early life. He also has suffered from frequent infections–including had five cases of bronchitis, three upper respiratory infections, six cases of pneumonia, RSV and three ear infections over a year and a half span, weight issues that have led to the installation of a long-term feeding tube, and more. Rylan and his family are happy to report, however, that after 2 years and 6 months, the doctors have finally diagnosed Rylan with FG Syndrome. Now that the doctors know what his illness is, they can give Rylan the treatment that he needs!

 

Adler
Adler is a 7-year-old boy from Elkhart, Indiana battling inoperable pilomyxoid astrocytoma brain cancer, hydrocephalus, adrenal insufficiency and chronic pain. After being diagnosed with arachnoiditis in February 2014, Adler’s parents’ search for pain management yielded little success and their 4-year-old boy was brought to the emergency room at Lurie Children’s for an MRI of his head, neck and full spine. Results revealed his head was full of fluid and a permanent shunt was needed to drain it. He began improving within hours of the surgery, but pain in his lower back continued. He was eventually brought back to Lurie for tests that revealed an inoperable grade two pilomyxoid astrocytoma with a 50/50 prognosis. Adler continued chemotherapy or more than 15 months and in October 2015 his cancer was determined to be stable. Today he continues to receive MRIs to monitor growth, but the intervals between them is as long as they’ve ever been, as doctors say he’s in a “golden spot.”

 

Anna
Anna was a completely healthy 9 year old in March of 2015. On Friday she began complaining her eye burned a little. She began to run a fever and her eye started to swell. After two trips to the pediatrician that weekend, she was given the diagnosis of Cellulitis and antibiotics to treat it. Noticing it was getting worse instead of better, the next day mom posted a picture for advice on how to help soothe it. Thankfully a friend who works at Cincinnati Children’s Ophthalmology saw the picture and immediately called mom. She also made Anna an appointment at the opthamology clinic for that morning. When Anna arrived she was diagnosed with orbital Cellulitis. She had a CAT scan with contrast done which showed that the cellulitis had caused an abscess that was very close to her brain. Within hours she was admitted to the hospital and rushed to surgery. She not only had the abscess drained, but also had sinus surgery to remove blockages. She spent 4 days in the hospital recovering. She had many follow up appointments with Opthamology and ENT in the three months following surgery and has been given a clean bill of health. We are so thankful for the knowledge, expertise and quick action at Cincinnati Children’s. They saved Anna’s sight and her life!

 

Cordelia
Cordelia is a 4-year old from Cleveland Heights who doesn’t slow down for much. She loves pre-school, swimming, singing, basketball, and ice skating! As a newborn, she battled Neuroblastoma, a type of cancer, and many complications from side effects of the cancer. Throughout her journey, her indomitable spirit has been a beacon of hope to her family, friends, and everyone else who comes into contact with her. Thanks to the fantastic doctors, nurses, and therapists at UH Rainbow Babies and Children’s Hospital in Cleveland, she’s a cancer survivor!

 

Aiden
At three, Aiden was diagnosed with autism spectrum disorder. He has had speech, occupational, and ABA therapy with an amazing team of Nationwide Children’s Hospital therapists he has done so well that he’s in mainstream classes in school and is exceeding everyone’s expectations. Aiden is intelligent, funny, imaginative, and very loving. We cannot thank the team of NCH staff enough for all the hard work they did to get him to where he is. Aiden loves Pokémon, video games, reading, and he loves everything science and one day wants to design video games. Aiden has been the Patient Champion for NCH for the last two years he worked mainly with NASCAR to bring awareness to autism through Elliott Sadler and Dale Earnhardt Jr.

 

Alex
“The night Alex was born, the doctor asked everyone but me and my husband, Drew, to leave the room so that he could talk about what was wrong with him,” says Alex’s mom Mindy. “I was like, ‘what do you mean, what’s wrong? He’s perfect!’ And he said, ‘well, let’s start at the head and work our way down to his feet’.” 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). 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 at Shriners Hospitals for Children in Lexington, Ky. As he grows—and outgrows his prosthetic—Alex is fitted with a new leg. He is now on prosthetic leg number five. Over the years, the Hilgefords’ connection to Dayton Children’s has deepened, extending far beyond Alex’s care. Mindy has worked at the hospital as an employee since Alex was a baby—first as a medical assistant, and now as a surgical nurse. Drew, who owns two Dairy Queen franchises in Dayton, has supported the hospital’s fundraising efforts for many years through his work. This has involved everything from handing out free Blizzards during telethons to selling Dilly Bars at the hospital and donating all the profits to Dayton Children’s. Many times Alex and his two siblings join in the fun.

 

Amanda
Amanda came to Dayton Children’s when she was nine years old. What had started as a normal day at the park with her family, changed her life for forever. After complaining about a headache, she collapsed. She had suffered from a burst arteriovenous malformation (AVM) in her brain. An AVM is a tangle of abnormal blood vessels connecting arteries and veins in the brain. Brain AVMs are very rare and affect less than one percent of the population. After her surgeries Amanda stayed in the pediatric intensive care unit in the Wallace Critical Care Complex at Dayton Children’s and was placed into a coma for several days to help her body heal. Slowly but surely Amanda began to recover. When she woke up, she recognized her family right away and would follow them around the room with her eyes and communicate by blinking. Eventually, she began to talk again and was able to begin physical therapy to work on regaining her range of motion. Less than a year after her surgery, Amanda is back to her spunky and happy personality. She loves to draw, play with her friends and her dog, and spend time with her family.

 

Gabriella
On November 12, 2014, Gabriella had a brain surgery called decompression surgery for her Chiari Malformation. Prior to knowing she had Chiari, Gabby had seemed to be struggling with school, and had other various issues. Gabby is now back in school full time, and has shown great improvement. The family is thankful for the wonderful child life specialists that made Gabby’s hospital stay as positive as possible. From their surgical safari tours, to arranging to see the therapy dogs, a child life specialist was always there for Gabby.

 

Easton
Easton was born screaming and with perfect APGAR scores. A few minutes after birth, everything changed. His hands and feet turned blue. Easton’s mom knew something was very wrong. He was admitted into Hurley Medical Center’s Neonatal Intensive Care Unit and diagnosed with a life threatening condition, PPHN (Persistent Pulmonary Hypertension in Newborns.) This condition affects about 1 in every 1,000 babies and can end fatally. Easton was kept alive by Hurley’s NICU physicians, nurses and respiratory therapists who worked around the clock. He was induced into a paralytic state in order for the machines, tubes and medications to take over and breathe for him in an attempt to heal his body. There were multiple times when Easton almost lost his fight but thanks to his will to live, the diligence of Hurley’s NICU team, and the Grace of God- he made it. He struggles with asthma and chronic lung disease but is an otherwise healthy, soon-to-be first grader!

 

Keegan
Keegan was born with a cleft lip and palate and has countless surgeries with Dr. Mann. He also had cranial synostosis when he was 14 months old and they cut ear to ear took his scalp out shaved it down and replaced it. He then had to wear a helmet for a few years and now can never play contact sports. On September 29 2010, a day before his 9th birthday, Keegan was diagnosed with an inoperable cancerous brain tumor on his pineal gland in the middle of his brain. He endured 6 intense cycles of chemo and 30 radiation treatments. He is now in remission Thank God! He then decided that he would like to give back and help other kids fight so he created the idea of Team Keegan and we are now a nonprofit organization that sends handmade wooden treasure chest filled with $100 worth of toys to kids fighting cancer all over the US.

 

Will
On March 10, 2013, Will and his family were completing tombstone etchings in a local cemetery when Will climbed up on a tombstone to get a closer look. The tombstone then toppled over, landing on top of Will’s head. Will sustained a massive crush injury to his head. He was taken to Halifax Regional Hospital by his parents from the scene. Once Will arrived there, the decision was made to have him transferred to Vidant Medical Center. He endured several surgeries while in life-saving mode following the accident. It was very touch and go for several days as he fought for his life. Once stable, Will underwent a tracheostomy. To help with the fractures to his face, he had to have his jaw wired shut. After miraculously overcoming his injuries, he was transferred to Pediatric Rehab on May 1, 2013. Will defied all medical odds up to that point. He continued to make strides in Rehab and eventually gained the ability to walk, talk and do everything that a typical little boy does. Will was able to go home on July 24, 2013. He now walks independently, talks and eats everything in sight.

 

Ben
After a normal birth and typical development as an infant, Ben Edwards began falling a lot before completely losing the ability to walk as a toddler. He was just 18 months old when he was diagnosed with a brain tumor that was rapidly taking up territory in his brain. Ben underwent five surgeries, including two emergency surgeries, at Riley Hospital for Children in Indianapolis as well as 32 rounds of radiation therapy treatments. This year, Ben is celebrating being cancer free for six years and is looking forward to starting 2nd grade in the fall. He loves outdoor activities, doing anything with his older brother, Blake, and snuggling with his favorite stuffed zebra named B.

 

Allyson
In March 2016, Allyson was diagnosed with influenza A which quickly worsened. Within a few days she was airlifted to Riley Hospital for Children in Indianapolis and placed on an ECMO machine, which provided 100 percent support to her heart and lungs. In the Pediatric Intensive Care Unit, Allyson’s team involved the expertise of more than 30 Riley specialists. Lack of blood supply to her right leg eventually led to surgeons removing Allyson’s leg above the knee. This girl who was given little chance of survival went home after a nine-week stay. Allyson’s mother, Amanda, credits everyone at Riley Hospital with not only saving her daughter, but also taking care of their family.

 

Marlee
Marlee Davenport from Bloomington, Ind. was born missing nine of 12 ribs on her right side, causing severe scoliosis and her right lung to be abnormally small, leaving her unable to breathe on her own. At 10 days old, she had her first of more than 20 surgeries, to receive a tracheotomy. In total, Marlee spent six months at Riley Hospital for Children before being discharged. Marlee has surgery every four to six months to adjust her Vertical Expandable Prosthetic Titanium Ribs (VEPTR). The VEPTR help stabilize Marlee’s spine and separate her ribs, allowing her lungs to expand as she grows. In the words of her idol, Taylor Swift, she “shakes off” any physical restrictions and enjoys climbing on monkey bars, attending gymnastics classes and jumping on the trampoline. Marlee will continue to have surgeries and follow-up appointments for the rest of her life.

 

Claire
When Claire’s parents, Matt and Megan found out they were having twins, they never imagined that we would only be able to bring one baby home. When Megan gave birth at 24 weeks, Grady Robert was born weighing 1 pound 13 ounces, and Claire Marie weighed 1 pound 6 ounces. No amount of consultations with the RNICU could have prepared them for what was about to happen. During the first few days, Grady and Claire both required chest tubes and were diagnosed with severe bleeding in their tiny brains. The severity and degree of the damage was undeterminable at the time but there was a possibility of the children never being “normal”. Within days, Grady developed a perforated bowel, and ultimately, the bleeding in his brain began to cause multi-organ system failure. After 17 days, sweet baby Grady passed away. Throughout Claire’s 135 day journey at Sparrow, she was cared for by nurses, neonatologists, respiratory therapists, neurologists, gastroenterologists, endocrinologists, ophthalmologists, and a physical therapist and speech therapist. There were so many caregivers and disciplines who played an important role in helping Claire heal and thrive. With all that Claire has overcome and endured, her parents truly believe she embodies the definition of a true miracle, and are excited to be able to share her “miracle” story.

 

Parker
It’s every parent’s fear that their child will have a medical emergency. That fear became a reality for Parker’s family when she was having difficulty breathing and her lips were turning blue. Who could have imagined that Speedway would have involvement in the care she received? Parker was transported to Kentucky Children’s Hospital (KCH) in the Speedway Pediatric Transport, designed and equipped specifically to handle emergencies involving children. This ambulance was made possible in part to the generosity of Speedway and their ongoing support of KCH via their Children’s Miracle Network Hospitals fundraising. That funding has been utilized to improve the patient experience for children through the Speedway Pediatric Transport, establishment of the Pediatric Progressive Care Unit, and renovation of the Jungle Pod on the Acute Care Floor of KCH.

 

Dawson
Dawson was diagnosed with seven brain tumors and three spinal tumors in April 2006. He was just six months old. The largest tumor on his brain is inoperable due to its location. He immediately began chemotherapy enduring five full years of chemo consisting of four different drug combinations. He completed chemo in February 2012 with only the largest tumor remaining at roughly 20% of its original size. He is legally blind and has many long-term health issues due to the location of the remaining tumor. Dawson will continue to be monitored for tumor growth and other related health issues. Dawson excels in his school work and played basketball for the first time this year.

 

Joey
On December 13, 2011, Joey was unexpectedly born at 26 weeks. He weighed 1 pound, 15 ounces and was 13 inches long. The doctors were unsure if he would survive, and if he did whether or not he would have any long-term complications. Joey spent 74 days at Children’s Hospital with tubes and wires hooked to his tiny body for medicine and nutrients. He had a breathing machine and oxygen to help him breathe. He had to be under a special light to help with his jaundice and his eyes did not open until day 5. There were several ups and downs in 74 days, the main problem was his under developed lungs. Joey could not breathe on his own for about 2 months. On February 24, Joey was released three weeks early from the NICU. Joey could suck, swallow and breathe which meant he could eat on his own! Joey came home on medicines to keep him breathing, oxygen and monitors. Joey was taken off oxygen on August 22.

 

JP
When JP was born, he could barely move, constantly slept and wasn’t eating regularly. It wasn’t until he was nine months old that he was able to hold his own head up, and that’s when doctors began to fear that JP would never be able to walk. JP underwent surgery at Arnold Palmer Hospital for Children and was referred to specialists at The Howard Phillips Center for Children & Families who recommended occupational and physical therapy. Just before his second birthday, JP was diagnosed with Potocki-Lupski Syndrome (PTLS), a very rare health condition linked to the duplication at a gene in chromosome 17. PTLS causes many of the complications that JP experienced, including his developmental delays, speech problems, low muscle tone and feeding difficulties. Thanks to his therapy JP received, he can walk, run and dance with his seven siblings.

 

Bryttani
Bryttani has been singing since she could speak. However, unlike most music-loving teenagers, Bryttani was born with a facial deformity. A Tessier cleft is a rare, severe midline facial cleft. Bryttani’s cleft began at her lip and palate, extended through the area where the nasal structure should have been and ended in the area of her left eye, which was missing. Since birth, Bryttani has undergone numerous surgeries including cleft lip and soft palate correction, bone grafts, jaw alignment, surgery to build up her socket to for a prosthetic eye and another to connect her tear ducts. Bryttani has also received extensive orthodontic work on her upper jaw and hard palate. Once she’s finished growing and all of her orthodontic work is complete, Bryttani will undergo nasal reconstruction. Despite everything, Bryttani keeps on singing. She’s a confident young woman who loves to write and perform her own songs. Child life specialists, through creative art therapy, music therapy, pet therapy and developmentally appropriate play, helped Bryttani through her emotions. Through the pet therapy program Bryttani was able to meet Lentil, a French bulldog who also underwent surgery to repair his cleft palate.

 

Lance
At 4-years-old, Lance’s family thought he injured himself due to intermittent problems. After being examined by a few doctors, an MRI at Children’s Hospital of Pittsburgh of UPMC diagnosed Lance with a brain stem tumor and optic nerve glioma. Lance underwent countless treatments of chemotherapy and radiation, then a vaccine trial. The injections were substantial and painful. He experienced symptoms following injections including tiredness, low grade temperatures, headaches, leg pain, and cysts at the injection point. Lance’s family decided to stop treatment and opted for a drug that could potentially manage symptoms due to worsening symptoms. With an exceptional response to the final drug, the family received news they weren’t sure they’d hear–an MRI confirmed significant improvement. Today, Lance is stable and returns to Children’s Hospital for routine checkup appointments. He has a strong bond with his family and has become a huge WWE fan.

 


Aubrey
Aubrey was born with spina bifida, which caused a curvature in her spine (scoliosis). Aubrey, who uses a wheelchair to get around, is a feisty eight-year-old who loves pink, her wheelchair basketball team, and her pet guinea pig, Megatron. She leads a busy life, and her family didn’t want her to be slowed down by the many invasive surgeries that are frequently required in scoliosis cases. Aubrey came to Duke Children’s, where physicians implanted in her back a MAGEC (MAGnetic Expansion Control) rod that can be lengthened to accommodate growth by remote control, without surgery. Aubrey comes to Duke Children’s every three months for a quick, painless, 15-minute lengthening appointment. Then, she sneaks back to school, her friends, and her busy life, avoiding the many complications of surgery and the interruptions of long hospital stays.

 


Sophia
Sofia’s story began with a black eye. Her worried parents took her to the ER at Johns Hopkins All Children’s Hospital. They found out Sophia had stage 4 high-risk neuroblastoma and be gan five rounds of intense chemotherapy immediately. Sofia received very aggressive multi-agent treatment from the specialists at the Johns Hopkins All Children’s Cancer & Blood Disorders Institute. She started DFMO as soon as she completed the immunotherapy. DFMO is a clinical trial for patients who have undergone the aggressive multi-agent therapy including chemotherapy, radiation therapy, surgery, transplant and immunotherapy with the goal of sustaining remission. Sophia’s mom, Catalina, explains, “We are so excited, because we know DFMO has helped extend life for children with neuroblastoma.”

 

Landry
At age 4, Landry was diagnosed with Juvenile Idiopathic Arthritis and immediately received a procedure to withdraw fluid from her knee, and steroid injections. Since that time, Landry’s JIA has been asymptomatic. One year later, after noticing discoloration of her knuckles, elbows, and knees, along with chronic rosy red cheeks, Landry was diagnosed with Dermatomyositis. This is an autoimmune disease that can affect skin, muscles, and organs. After monthly doctor visits, oral medications, and weekly at-home shots, it was determined that Landry would need to begin monthly infusions as well. Landry says she struggles with “angry” skin, but her family’s hope is that early detection and treatment will inhibit any muscle or organ weakness. It isn’t always easy for Landry, but she is brave. Landry’s family is grateful for Monroe Carell Jr. Children’s Hospital at Vanderbilt because they took a personal interest in their daughter. Vanderbilt Children’s Hospital helps Landry heal and makes her feel like a superstar. Landry’s favorite hobbies are soccer, swimming, board games, and NetFlix. Her favorite television show is American Ninja Warrior, and her favorite musical artist is Justin Timerlake.

 

Kyra
After losing their son Cameron, who was born at 27 weeks, Kyra’s parents were extremely cautious when they got pregnant with Kyra. Many precautions were taken to avoid a premature birth. Just hours after birth, Kyra was agitated and began having difficulty breathing. After an examinations, her terrified parents learned that she needed to be transported via Life Flight to Mercy Children’s NICU. Tests showed she had Group B streptococcal pneumonia and after 14 days of antibiotic treatment, she was finally able to go home. Kyra is now a happy, healthy four year old. She loves playing with dolls, watching football with her dad, shopping at garage sales with her mom and singing her favorite songs.

Comments for Meet the 2017 Speedway Miracle Kids!

  1. All of these children have amazing stories. By the grace of God, talented medical personnel, science, awesome support team and a never give up spirit of these kids, they are truly miracles.

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