Miracle Kids

Alexia is 13 years old, enjoys reading and skating, and is a member of Girl Scouts.  She was diagnosed with scoliosis, severe curvature of the spine, several years ago and has recently been diagnosed with Chiari I Malformation.  Chiari malformations are structural defects in the part of the brain that controls balance. Alexia’s memory is affected with this diagnosis, which sometimes makes school difficult.  She is also restricted from certain physical activities that are a risk of injury to her neck and head, such as rollercoasters or dodgeball with friends. Alexia is seen in the Sooner Pediatrics and Orthopedic clinics at Children’s.  She hopes to become a chef when she grows up.

Braden was diagnosed with Costello Syndrome shortly after his first birthday in 2011. Braden faces several adversities on a daily basis including feeding difficulties, severe food allergies, physical immobility, many doctor appointments, and therapy sessions.  Braden has endured several surgeries in the first three years of life but he doesn’t let any of this keep him from being happy and enjoying life.  Braden enjoys Thunder Basketball and reading books and has a big sister named Cameron.

Brock was only eleven months old when he was diagnosed with Acute Lymphoblastic Leukemia (ALL). He initially responded well to treatment and went into remission early. However, during his first round of chemo he became critically ill and his organs started failing. He was diagnosed with a rare fungal infection, Invasive Aspergillosis. This infection complicated his treatment for leukemia and he spent many months at OU Children's Hospital. The infection caused him to spend seven weeks in the Pediatric Intensive Care Unit at The Children’s Hospital in Oklahoma City. Brock was in the hospital for 19 consecutive weeks after diagnosis before he was healthy enough to return home. Because of his complications he's been seen by almost every specialist at Children's. He's had 13 surgeries, dozens of CT scans and over 100 blood transfusions. After 3.5 years of chemotherapy and anti-fungal medication Brock finished treatment in February 2013 and remains cancer free! The doctors at Children’s Hospital have done a wonderful job caring for him and today Brock is living proof that miracles happen!

“The relationships we've made with the students (both exec member and our adopt-a-family group) have been very special to us. They always make an effort to make our kids feel special. Our favorite parts about the actual day of Soonerthon are the spirit tunnel, the talent show, and the reveal.” - The Hart Family

Camden was diagnosed with Acute Lymphoblastic Leukemia (ALL) on 
August 30, 2005 at the age of one and a half. He was admitted to the Jimmy Everest Cancer Center at OU Children's Hospital and began treatment.Camden began his first protocol of chemotherapy treatment and was very resistant to treatment.  After his second protocol, and realizing how aggressive his cancer was, his family was told he would need a bone marrow/stem cell transplant. Doctors started his third protocol in hopes of getting him into remission, during this time he was placed on the National Marrow Registration in hopes of finding a donor match. In November of 2005 Camden finally went into remission and from there went straight into preparation for his transplant. In preparation for his transplant, Camden had to undergo more chemo and 8 rounds of full body irradiation. On November 16th 2005, Camden received his stem cell transplant. On December 20, 2005 he was able to come home just in time for Christmas. Camden is currently in remission and still carrying his stem cell donor. He continues to visit the oncology clinic yearly along with regular check-ups from the neurologist, and pulmonologist.   He is an active boy who loves Tae Kwon Do and Thunder basketball!

Casey was diagnosed with Spina Bifida and hydrocephalous at 18 weeks gestation.  After his birth on December 27, 2005, doctors also discovered Casey suffers from epilepsy.  He has endured well over a dozen surgeries to repair defects of these diagnoses.  Thanks to weekly physical and occupational therapies since birth, he is able to use a walker and leg braces in addition to his wheelchair to ambulate around home and school. Despite his medical issues, Casey is a happy and thriving boy who loves basketball and music. He even has his own youtube channel! His family is thankful for the wonderful doctors and quality care they receive from The Children’s Hospital at OU Medical Center.

Three year old Connor was born with spina bifida and fluid on his brain and kidneys. Doctors performed his first surgery at two days old to close and repair his back and he underwent additional surgery at five days old for a shunt placement to relieve swelling on his brain. In his short life, Connor has endured numerous shunt revisions, major brain surgery, and a spinal cord detethering. Connor receives speech and physical therapy services to help him progress. Connor is a very friendly boy who values independence.

Before Gabe’s second birthday, his mom noticed he suddenly wasn’t eating and it appeared he had a severe stomach ache. His parents took him to the hospital where they learned that he had a tumor on his liver. During surgery, the tumor, as well as more than 60% of his liver, was removed. He stayed in the hospital for two weeks and then had a slow recovery at home that included complications such as jaundice and high fevers. Gabe returned to the hospital for an additional surgery to re-route his bile ducts. Every August, he returns to the hospital for a scan to confirm that the tumor hasn’t returned. Today, he is happy and healthy. He’s started playing soccer and loves eating pepperoni pizza. When he grows up, he wants to be a monster truck driver.

Hailey was born with a rare genetic disorder characterized by severe malformations of the chest cavity, ribs and thorax, which affected her ability to breathe. Hailey wasn’t expected to live long after birth. A few months later, Hailey was diagnosed as blind. Despite the odds that she would not walk, breathe on her own or see her 10th birthday, Hailey has accomplished all three. She walked before she crawled, is breathing on her own and has excelled in braille and Cherokee language competitions.

As of April 2015, Hailey is a four-time 1st Place Oklahoma Braille Challenge winner (2012-2015) and three-time Oklahoma Braille Challenge “Overall Top Score” winner (2013-2015).  Hailey has achieved one of the 12 top highest scores in the nation and Canada every year she has competed securing her position at finals of the National Braille Challenge in California for the three consecutive years. Hailey has made it as a Finalist for her FIFTH time IN 2017!  She didn't get to compete in the 2016 competition do to the surgeries in April of 2016, and she wasn’t released from the hospital until June!  Hailey is doing great now but it was a very tough time for her!  She was the CMN Champion Child in 2015!

Henry was diagnosed with Cerebral Palsy at one, but he does not let that define him!  Henry is Henry, and we will not let a diagnosis get in the way of him exploring and enjoying life! Henry has an 8 year old brother and 6 year old sister that he loves.  He really enjoys playing with any kind of ball and loves for someone to help him hit and run bases. He enjoys cars and playing outside with any sand dirt or water. Henry currently receives physical, occupational, and speech therapies. He uses a walker to walk and can army crawl. Henry is always happy and loves to socialize with others.  He is always smiling. He is a joy to be around and he knows no stranger. 

Jaxon was diagnosed in June 2012 with Kyphosis, a condition of over-curvature of the upper back.  Though he can’t bend his back the way other boys his age can, he doesn’t let it keep him from enjoying baseball and playing outside with his brother.  He had a surgery to place a rod in his back to help with the curve.  

His younger brother, Lincoln, was diagnosed with epilepsy at birth.  He takes medication twice a day to prevent seizures and has hopes to ride a horse at his school after two years of being seizure free.

Jalesa was born February 18, 2010 at 27 weeks gestation after her mom spent three weeks in the hospital with preeclampsia.  She weighed 1.8 pounds and was 13.5 inches long.  She cried like a kitten when she was born and was whisked away to the NICU soon after.  At one day old, Jalesa was diagnosed with bronchial pulmonary dysplasia – lung disease in babies under age 1.  At about 2 weeks, she was put on a ventilator due to an infection but was forced to move into the high pressure jet when the vent proved not to be strong enough for her.  Doctors finally discovered bacteria called Psuedomonas that was causing the horrible infection.  The doctors weren’t sure if Jalesa would survive the strong antibiotics it took to knock out the infection.  Her mom stood firm and declared that Jalesa is a fighter.  Two weeks later, she started improving.  She was released from the NICU on oxygen, pulse ox, and an apnea monitor. The effects of prematurity are still with Miss Jalesa. She currently receives two breathing treatments a day and is on an assortment of medications to help with reflux, allergies, constipation, etc.  At 19 months old, she was diagnosed with chronic lung disease and failure to thrive. Most recently, Jalesa was diagnosed with sensory processing disorder, which requires speech and occupational therapy at The Children’s Hospital. Jalesa attends therapy and continues to spread happiness with her beautiful smile.

Lucy was diagnosed shortly after birth with Congenital Adrenal Hyperplasia, or CAH. People with this condition are unable to make the stress hormone cortisol, and can become very ill in times of physical stress. Her first year was very traumatic, with weekly weight checks and monthly heel pricks. She had stopped growing and weighed only 15 pounds for several months.

At one year of age Lucy entered a Life History Study at the National Institutes of Health. At that time she was referred to Dr. Laura Chalmers, a Pediatric Endocrinologist at OU Children’s Physicians. Thanks to the cooperative care between her medical teams at Children’s and NIH, today Lucy is extremely active and outgoing. Lucy’s pediatric endocrinology nurses have made sure that each person in Lucy’s life is aware of the symptoms of adrenal crisis, a life-threatening event for a person with CAH, and how to respond in the event of a crisis. She will be on replacement doses of hormones for life due to the adrenal insufficiency associated with CAH, but with her family and medical team behind her, there’s nothing she can’t do! She enjoys reading and swimming now too!

Maddison was born in December 2000 with Tetralogy of Fallot, which consists of four major defects within her heart and severe defects which affect her lungs, causing pulmonary hypertension. Maddison endured two surgeries during infancy to provide blood to her lungs and to repair her heart defects.  She has also undergone multiple procedures to try to increase the size of her lung arteries.  In time, Maddison will likely have to undergo multiple procedures to try and increase the size of her lung arteries and to lower the pressure in her lungs.  Eventually, if the procedures are still unable to relieve the high pressures in her lungs, she will have to undergo a heart and lung transplant to try to prolong her life. Maddison loves to play her guitar and sing.  She has written songs about her illness and performed them at various community events to raise awareness for the work of Children’s Hospital Foundation. Research is the key to treatment and prevention. All funds raised through CHF will benefit pediatric research, education, and clinical care programs in Oklahoma.  Maddison is such an inspiration.  She always has a smile on her face and is full of life.  Most people think she has nothing wrong with her because she fights with a smile and laughter.  

Madison is a very special miracle child that has a close bond with The Children’s Hospital. She was born weighing only one pound seven ounces and was given a 2% chance of survival after her twin brother died.  While at a different hospital, she contracted MRSA in the NICU and was immediately metaflighted to Children’s. She stayed for several months as her premature body fought for life. Children’s was able to perform the surgery that helped to rid the deadly infection from her tiny body. Madison spent 4.5 months in the NICU before her family could take her home. Because of the damage caused by the MRSA infection, Madison has a significant length discrepancy and a mild deformity from damaged joints and growth plates. She has endured numerous surgeries to help straighten and strengthen her leg. She is also seen in the orthopedic clinic at Children’s for periodic check-ups and xrays. Madison and her family are very thankful to the medical teams that have helped save Madison’s life. She is an incredible little girl with many talents and a special light inside her heart.

Mattie was diagnosed with Congenital Diaphragmatic Hernia (CDH) before birth at 19 weeks gestation. Only 50% of babies born with CDH survive and the cause is still unknown. Mattie’s parents were referred to Dr. Letton before her birth and knew as soon as they met him that their baby was in the best of hands. Mattie was born March 15, 2011 at The Children’s Hospital at OU Medical Center. Mattie was born with a severe Diaphragmatic Hernia leaving her with less than 10% of the left side of her diaphragm which allowed all of her abdominal organs to develop in her chest, compromising the development of her left lung, and pushing her heart to the right side of her chest. Mattie was on ECMO for 4 days and underwent multiple surgeries and overcame any obstacle that was thrown her way during her 12 week NICU stay. After spending her first birthday in the ER at Children’s with a respiratory virus, a chest x-ray showed that she again, had a diaphragmatic hernia. Her diaphragm was repaired yet again. At 3 years old, Mattie was diagnosed with progressive scoliosis and another diaphragmatic hernia. She was referred to Dr. Puffinbarger for her scoliosis.  She wears a back brace approximately 20 hours a day and will continue to do so until she is done growing.  Now 6 years old, she sees Dr. Letton and Dr. Puffinbarger regularly for her scoliosis and her  current diaphragmatic hernia.  

Due to his sister Mattie's medical history with CDH, Jeremiah's mom saw a specialist through her whole pregnancy to make sure the baby was healthy and didn't have the same birth defect as big sister.  All was well and baby was healthy.  Jeremiah's mom had gestational diabetes, but otherwise had a healthy pregnancy.  When Jeremiah was born, his blood sugar was extremely low at only 29.  He immediately started having trouble breathing on his own and needed to be flown to a nicu that was equipped to put him on a ventilator.  Because he was in respiratory distress, the pediatrician at the hospital he was born at was worried he may have been born with a diaphragmatic hernia that went undetected before birth.  They started asking Jeremiah's parents for Mattie's medical history.  Because OU Children's is the only hospital in the state that has ecmo for babies and Jeremiah would possibly need ecmo, he was flown to Children's.  Upon arriving at Children's, it was determined that Jeremiah's journey would be different than his sisters.  Jeremiah was in respiratory distress due to maternal gestational diabetes.  Because of the gestational diabetes, his lungs weren't quite ready to work on their own.  He needed some time to adjust to being in the world and doing things on his own.  While in the nicu, he was on the ventilator, had a feeding tube, and for a short while had a chest tube. Once he was able to come off the ventilator and start eating on his own, Jeremiah was able to go home at 2 weeks old.  Jeremiah is now perfectly healthy and has no ongoing medical needs.

On October 22, 2009 Nathan, 2 ½ years old, was diagnosed with a Wilm’s Tumor, a stage 3 kidney cancer.  Nathan and his family were dropped into the middle of the foreign land of pediatric cancer. Nathan was immediately admitted to The Children’s Hospital at OU Medical Center and had surgery to remove tumor and one kidney.  He then started radiation treatment and later endured 33 weeks of chemotherapy. Through multiple hospital stays, clinic visits, pokes, surgeries, and tests this little boy became a brave warrior.  Nathan’s family is thankful for the confidence they had in their doctors and medical team at the hospital and the Jimmy Everest Center at OU Children’s Physicians. Nathan’s family was confident throughout his treatment that they were receiving the best care possible thanks to doctors supported by Children’s Hospital Foundation. Nathan has been cancer free for over 7 years!   Nathan is now a vibrant, healthy boy who loves getting dirty and being loud!  He has an amazing sense of humor and thrives in making people smile!

Piper was born six weeks early in December 2013. Her mom was diagnosed with pre-eclampsia at 29 weeks and spent five weeks on bedrest in Children’s Hospital before Piper was born. After birth, Piper contracted an infection in her lungs which is common with premature infants. She spent eight days on a ventilator and 19 days in the NICU. Piper had a rough start but is doing fantastic now! She takes medication daily for hypothyroidism and has checkups at Children’s Hospital every other month. 

In May of 2013, Samantha was diagnosed with Chiari Malformation, a congenital defect in the back of the head where the brain and spinal cord connect, and Syringomyelia, a disorder which a cyst forms within the spinal cord.  She experiences pain, numbness, and dizziness and is unable to participate in sporting activities. In August 2013, Samantha underwent decompression surgery, a procedure performed to remove the bone at the back of the skull and spine. Samantha hopes that doctors can determine the cause of her complications, which include severe back and stomach pains, so she will be able to participate in sports again soon. Samantha is a sweet girl who enjoys helping others and participating with Oklahoma Baptist Children’s Choir. Her favorite part of Soonerthon is the rave! She enjoys singing, dancing, and art in her free time!

Sydney was born on September 25, 2008 and appeared relatively healthy, other than the bilateral hydronephrosis, or water on her kidneys, that was discovered at a 19 week ultrasound.  During the next few months Sydney developed a high pitched cough and her lips would turn blue on occasion when she would cry.  By January, Sydney had been diagnosed with five respiratory infections, been hospitalized twice, and was on daily breathing treatments.  An Upper GI and Xrays confirmed a vascular ring, causing the cough and cyanosis, and also revealed reflux, tracheomalacia, and malrotation of the intestines. Sydney was sent to Children’s for a surgery consult to correct the vascular ring and malrotation.  An echo, MRI and CT were performed shortly after the visit and also showed that Sydney had a small hole in her heart and a large Kommerell’s diverticulum. She then has a surgery to correct the vascular ring, malrotation, Kommerell’s Diverticulum, and to perform an appendectomy and aortopexy. Sydney continues the coughing and is a loud breather, but she is on medication and daily breathing treatments that help.  

In August 2009, three year old twins Tanner and Wyatt were helping their parents clean up the kitchen.  Tanner carried a dish outside to empty it in the trash can with his dad.  When he turned around, he fell on the outside step onto the bowl, and it broke into several large pieces slicing him to the bone.  When the bowl hit the step, a large piece approximately 4 inches by 1.5 inches broke with a large dagger shaped spear on each end.  The glass severed his wrist almost off in one action his left arm was cut from inside to outside, including artery, tendons, nerves and muscles. Being from the small town of Nash, OK, the volunteer fire department was called, and Tanner was escorted to the Enid hospital all the while his father held the artery in his wrist so he would not bleed to death. Upon arriving at Enid hospital and cleaning up the wound, the pediatric surgeon admitted he was not equipped to handle such a severe injury.  Tanner was transferred to The Children’s Hospital, and the surgery team was assembled and ready for the 5.5 hour surgery which began at 1am. By the next afternoon, Tanner was in a hard cast from his shoulder to his fingertips, but he was released to go home.Even though the family had no health insurance at the time of the accident, the doctors and team at Children’s vowed to care for their son no matter the cost.Tanner still receives physical therapy and is learning to use his fragile muscles and tendons again.  He has severe nerve damage which will eventually require another surgery to correct, but for now he is an active boy that loves to play with his twin brother, Wyatt.