Our champion children are the entire reason our organization exists! Each season, we will focus on 10 children, pairing them up with a CC4C alumnus/alumna champion child, a champion teammate, and a high school team who, together, create a team of inspiration and support as they race toward their recovery finish line.

CLICK ON CHILD'S PHOTO TO GET TO FUNDRAISING PAGE.

Sustaining Champion Children

MADDIE

By | Sustaining Champion Children | No Comments

MADDIE

CHAMPION TEAMMATE: Suzy Seeley

CHAMPION HIGH SCHOOL TEAM: Cedar Park High School Celebrities

As a toddler, Maddie was often very sick. She had repeat sinus and respiratory infections, and when she was four years old, she had sinus surgery. Maddie remained relatively healthy for a few years after that, but then she developed a sinus infection that wouldn’t clear after 10 days on an antibiotic. Her ENT doctor put her on a 21-day course of sulpha drugs to knock out the infection. On day 19, she received a flu shot and within two hours had a high fever.

After one week, Maddie was hospitalized for Steven Johnson’s Syndrome. This disease occurs when the body doesn’t have enough immunoglobins to fight off infections. It affects the body anywhere there are mucous membranes present, both internally and externally, and causes a blistering rash inside and out.

Maddie received an implant to slow puberty down so she could grow. In the past five years, she has had three ports. They are supposed to last three years, but her body continually rejects them after roughly one year. The treatment for this disease is IV infusions. She has received one each month for the past five years. Chiropractic care helps prevent her from getting migraines and sinus infections. Her favorite quote is “Live strong, fight hard!”

She is partially homeschooled, but she’ll be spending a lot of time with her brand new “Celebrities.” She will be an honorary member of the Cedar Park High School drill team.

EVA

By | Sustaining Champion Children | No Comments

EVA

CHAMPION TEAMMATE: Talaya Frazier

CHAMPION HIGH SCHOOL TEAM: Lake Travis Cavalettes

Eva was diagnosed with psoriatic arthritis when she was five years old. This particular type of arthritis is a joint problem that often occurs in conjunction with psoriasis.

For three years, she bravely battled through this diagnosis. When she was eight years old, she began experiencing pain in her right eye. She had partial vision loss in both eyes—20/200—which was irreversible and uncorrectable with eyeglasses. She has seen three different types of ophthalmologists and is currently under the care of a neurologist.

Eva’s favorite quote is “Never give up,” and her hobbies include basketball, cheerleading, dance and gymnastics. The Lake Travis Cavalettes are excited to welcome her into their family as an honorary Cavelette this year.

TY

By | Sustaining Champion Children | No Comments

TY

CHAMPION TEAMMATE: Reese Ryan

CHAMPION HIGH SCHOOL TEAM: Hays High School Football

Ty’s started showing signs of health problems a little more than seven years ago. Over the course of time, he has been given 20 different diagnoses with no treatment or explanation.

He has been diagnosed with primary hyperoxaluria, a disease that causes repeated kidney stones, enteric hyperoxluria, celiac disease, failure-to-thrive, anorexia, gastroparesis, gastrointestinal motility disorder, asthma, REM sleep behavior disorder, a weekened immune system, gastroesphogeal reflux disease, executive function disorder, secondary ADHD, significant short-term memory impairment, adjustment disorder with anxiety and fibromyalgia.

He is on several medications, infusions and a gluten-free, low oxalate, low sodium and high potassium diet. Pierce has a MIC-KEY Button feeding tube to help him get stronger and feel better.

Ty is home-schooled, but this fall he will spend his Friday nights cheering on his new honorary teammates, the Hays High School football team.

DIA

By | Sustaining Champion Children | No Comments

DIA

CHAMPION TEAMMATE: Sarah Marshall

CHAMPION HIGH SCHOOL TEAM: Anderson High School Drill Team

After a vision appointment concluded that Dia’s optic nerve was dull, she had an MRI. Doctors discovered that Dia had a brain tumor, and she underwent brain surgery. Following the surgery, she went blind and the doctors concluded that there was no way to remove the tumor.

Dia underwent several surgeries over the next four months and doctors felt hopeful that her vision would return. The brain tumor is still active, and she has not been able to regain her vision.

Her official diagnosis, craniopharyngioma, a type of brain tumor derived from the pituitary gland, is rare amongst young children. Dia’s next step is to undergo radiation to remove the tumor, but doctors are prolonging this treatment in hopes that she will start to regain her vision first. She commutes to the Children’s Medical Center of Dallas for treatment.

When she’s not commuting to the Children’s Medical Center of Dallas for treatment or in school, she’ll be with her brand new teammates on the Anderson High School Drill Team.

Dia’s favorite quote is “Without sight, there is still vision.”

CHASE

By | Sustaining Champion Children | No Comments

CHASE

CHAMPION TEAMMATE: Mark Henry

CHAMPION HIGH SCHOOL TEAM: Bowie High School Basketball

At six years old, Chase contracted bacterial meningitis. He had been playing football in the yard and within moments, had fallen into unconsciousness. With a three percent chance of survival, Chase stayed in a coma and on life support for 10 days with little to no brain activity. After miraculously waking up, it seemed his body had basically made a full recovery. Slowly, his doctors began to realize after repeated illnesses and infections that his body’s ability to make his own antibodies had been destroyed by meningitis. He basically no longer has his own immune system.

For the past four years, Chase has been under the care of the Infectious Department at Dell Children’s Medical Center. He receives an IV infusion every month. Each infusion is a mixture of 20,000 different donor’s antibodies, giving him the best chance of being able to fight the many germs he comes in contact with. Through trial and error, the staff at Dell has done an amazing job matching him with a donor pool that has little rejection on his part.

Chase has been given a broad diagnosis of Primary Immune Deficiency Disease. Doctors believe his disease is more specific and continue to work toward a more specific diagnosis.

Chase loves all things sports with basketball being his true passion. His favorite quote is “Be strong… Live life!” This basketball season you’ll find him cheering on his new teammates at Bowie High School.

JEREMY

By | Sustaining Champion Children | No Comments

JEREMY

CHAMPION TEAMMATE: Jeni Raymond

CHAMPION HIGH SCHOOL TEAM: Regents School of Austin Football

After his eyes became shaky at three months old, Jeremy’s eyes stopped tracking movement one month later. Doctors in Houston and at the Cleveland Clinic weren’t successful in finding any type of diagnosis but warned his parents that he was quickly deteriorating and most likely would not live past one year.

At nine months, he had stopped smiling altogether and either slept or cried nonstop. A CT scan presented Jeremy with a craniosynostosis diagnosis. This is a birth defect that causes all of the skull plates to fuse together, preventing the skull from expanding to accommodate brain growth. Jeremy underwent surgery to relieve the cranial pressure at 13 months old, and his vision returned but his muscles remained extremely weak.

Doctors in Dallas, at the National Institutes of Health and Duke University guess that Jeremy has an endocrine disease because of the involvement of both bone and muscle. His condition causes his muscles to be so weak that he cannot walk, talk, sit or lift his head for long periods of time. He has constant headaches, nausea, neck and joint pain. Jeremy has had more than 40 surgeries, including five major skull surgeries, two heart surgeries and eight on his eyes.

He taught himself to read and write, a huge surprise to his family. He works extremely hard at daily exercises to strengthen his muscles and is working hard to find an easier way to communicate with everyone around him.

The Regents School of Austin football team is excited to have Jeremy hop on board this season as their newest honorary teammate. His favorite quote is “Believe in yourself.”

CAROLINE

By | Sustaining Champion Children | No Comments

CAROLINE

CHAMPION TEAMMATE: Michelle McCool Calaway

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Lacrosse

Caroline was born with Job syndrome, and at age three, officially diagnosed.

Job syndrome is a rare, inherited disease that is known to trigger problems with the skin, sinuses, lungs, bones, and teeth. It causes the skin to become covered in rash-like boils from head to toe.

For the first three years of her life, Caroline visited Texas Children’s Hospital, Mayo Clinic and an Immune Deficiency Foundation Conference hoping to obtain insight into immune disorders. She has had multiple pneumonias, surgeries and hospitalizations.

Caroline’s favorite quote is “No fear.” At school, she plays the violin, and she loves to cook and bake when she’s at home.

This year, she is a proud, new honorary member of the Georgetown High School Girls Lacrosse team… Eagle Fight Never Dies!

DREW

By | Sustaining Champion Children | No Comments

DREW

CHAMPION TEAMMATE: The Undertaker, Mark Calaway

CHAMPION HIGH SCHOOL TEAM: Hutto High School Football

Drew was diagnosed with juvenile arthritis when he was 11 years old. Nineteen months after the diagnosis, a series of illnesses led him to two more diagnoses—Lyme disease and occipital neuralgia.

Lyme disease is a bacterial infection spread through tick bites. Occipital neuralgia is chronic pain in the upper neck, back of the head and behind the eyes. It is caused by damage to the greater occipital nerve, a spinal nerve that affects blood supply to the occipital artery.

His favorite quote is “When you get knocked down, get back up.” The Hutto High School Football team is excited to welcome Drew as their new honorary teammate this season.

EVELYN

By | Sustaining Champion Children | No Comments

EVELYN

CHAMPION TEAMMATE: Shannon Sarnella

CHAMPION HIGH SCHOOL TEAM: Cedar Park High School FFA

Evelyn was born with mild breathing difficulties and no startle reflex. She had tubes put in at nine months old, after she had chronic ear infections. This caused her hearing, speech and motor skills to be delayed.

By age three, Evelyn was having increasing issues with her gastrointestinal health, respiratory and immune system health. Her eating and behavioral problems were also increasing. She was diagnosed with obesity, immunoglobulin G deficiency, gastroesophageal reflux disease and behavioral issues.

In 2005, the Wirth family moved to Austin from New Orleans. Evelyn’s new doctors also added autism, eating and sleeping disorders, epilepsy and asthma to her diagnoses. Evelyn has been under the care of five geneticists.

Evelyn’s favorite quote is “Come on, get happy!” This year, she’ll be joining the FFA program at her own school, Cedar Park High School

PIERCE

By | Sustaining Champion Children | No Comments

PIERCE

CHAMPION TEAMMATE: Erica Brennes

CHAMPION HIGH SCHOOL TEAM: Vandergrift High School Lacrosse

It doesn’t seem real, and it’s certainly not right, but with great sadness we lost our sweet Pierce to a brain hemorrhage on October 4, 2014. He fought the good fight against his brain tumor, and is now in heaven. God sometimes just needs his favorites up there sooner than we can understand.

Pierce was diagnosed with Anaplastic Astrocytoma, a grade three tumor, on his right thalamus when he was 10 years old. The tumor size was too large for surgery. Because of the tumor’s diffused nature and location, surgery was deemed not plausible, and it presented too many risks of complications at the time of diagnosis.

His treatment included proton radiation, chemotherapy, multiple surgeries and a ketogenic (a high-fat, adequate-protein, low-carbohydrate) diet.

Four months after his diagnosis, the tumor was upgraded to a Glioblastoma, a grade four tumor. Glioblastomas are a rare and aggressive brain tumor with poor prognosis.

Pierce’s favorite quote was “Keep the faith, bro!” The Vandergrift High School lacrosse team was wonderful in bringing Pierce in as their honorary teammate earlier this season.

 

AVERY

By | Sustaining Champion Children

AVERY

AGE: 12

MOTTO: “I Can Do All Things Through Christ Who Strengthens Me”

CHAMPION TEAMMATE: Tanya Streeter: World Record Freediver, TV Host

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Volleyball

As a small child, Avery had recurrent sinus and ear infections which would not clear up with antibiotics. She struggled with psoriasis which caused scaly patches to develop on her skin, and joint pain due to psoriatic arthritis. Around age three, she was diagnosed with common variable immunodeficiency (CVID) and began monthly intravenous immunoglobulin (IVIg) infusions. The infusions routinely caused aseptic meningitis which caused her to have severe headaches, nausea and vomiting. Avery had many sinus surgeries which included the insertion of multiple sets of ear tubes, a tonsillectomy, an adenoidectomy, a turbinate reduction and surgeries to the frontal and maxillary sinuses.

Avery is now 12 years old. She still gets monthly IVIg infusions but, with the help of post-infusion medications, she rarely suffers from aseptic meningitis. Avery has found that exercise is the best medicine (not to take anything away from her wonderful doctors). Avery has become an avid runner. She enjoys volleyball, and she completed her first triathlon. Avery’s favorite quote is Philippians 4:13, “I can do all things through Christ who strengthens me.”

EVA

By | Sustaining Champion Children

EVA

AGE: 9

MOTTO: “Never Give Up”

CHAMPION TEAMMATE: Talaya Frazier: 10X Boston Marathoner, Model, Spokesperson

CHAMPION HIGH SCHOOL TEAM: Lake Travis High School Cavalettes

Eva was diagnosed with psoriatic arthritis when she was five years old. This particular type of arthritis is a joint problem that often occurs in conjunction with psoriasis.

For three years, she bravely battled through this diagnosis. When she was eight years old, she began experiencing pain in her right eye. She had partial vision loss in both eyes—20/200—which was irreversible and uncorrectable with eyeglasses. She is now legally blind with 20/1,000 vision in both eyes and has extreme sensitivity to light. Most recently, Eva has started experiencing hearing and breathing issues. She has seen several specialists including three different types of ophthalmologists. She is currently under the care of a neurologist and a Lyme disease specialist. So far, no courses of treatment have helped.

Eva’s favorite quote is “Never give up,” and her hobbies include singing, playing the guitar, dancing, and gymnastics. The Lake Travis Cavalettes are excited to welcome her into their family as an honorary Cavelette this year.

EVELYN

By | Sustaining Champion Children | No Comments

EVELYN

AGE: 15

MOTTO: “Come On, Get Happy”

CHAMPION TEAMMATE: Shannon Sarnella: World Record Powerlifter

CHAMPION HIGH SCHOOL TEAM: Cedar Park High School Celebrities Dance Team

Evelyn’s health issues became apparent over the first few years of life. Initially her issues were mild, but they continued to develop as she grew. Chronic ear and respiratory infections, along with hearing, speech and motor delays defined Evelyn’s life.

By age three, she had increasing difficulties with her gastrointestinal, respiratory and immune systems. She was diagnosed with IgG immunoglobulin deficiency (immune deficiency), gastro esophageal reflux disease (GERD), recurrent pneumonia, obesity/eating disorder and behavioral issues.

In 2005, Evelyn and her family relocated to Austin from New Orleans following Hurricane Katrina. Evelyn’s new medical team added epilepsy, autism, ADHD, eating and sleeping disorders, hypothyroid, adrenal insufficiency, auditory processing disorder, sensory processing disorder and asthma to her list of diagnoses. Evelyn has been under the care of five different geneticists in the hope of finding an explanation and diagnosis.

ROBERT

By | Sustaining Champion Children | No Comments

ROBERT

AGE: 5

MOTTO: “Never Give Up, You Can Do This”

CHAMPION TEAMMATE: Jack Ingram: Singer/Songwriter

CHAMPION HIGH SCHOOL TEAM: Hays High School Football

Robert was diagnosed with stage four high risk Neuroblastoma when he was nine months old. He had seven rounds of chemo, two tumor removal surgeries, a stem cell transplant, 12 rounds of radiation and six months of maintenance therapy. He is now happy to say that he has been cancer free for three years. Unfortunately the chemo that saved his life placed many other obstacles in his path. It left him with a severe speech delay and motor processing disorder. It also left Robert with scarring on his liver that needs to be watched carefully. The chemo caused damage to his bone marrow and some of his adult teeth. He is in speech and occupational therapy three times a week. Robert gets follow-ups from his radiation oncologist and oncologist every six months to make sure he stays healthy.

Through it all he always smiles and enjoys everything that life brings his way. He will start kindergarten in the fall, and he will be in speech through school two times a week to help him with words. His family’s favorite thing to see is his smile. To see him smile brings them so much happiness.

JACOB

By | Sustaining Champion Children | No Comments

JACOB

AGE: 7

MOTTO: “I’m Not Afraid”

CHAMPION TEAMMATE: Holly Mills-Gardner “Miss Texas”, Model, Spokesperson

CHAMPION HIGH SCHOOL TEAM: Lake Travis High School Basketball

Jacob is one of the kindest children you could ever meet. He always wants to do what is right. He refuses to lie, and he was born with a sense of honor that most adults do not have. His Kindergarten teacher recognized this and cared deeply about his welfare.

He did very well the first few months of school, but sometime between Halloween and Thanksgiving he started becoming clumsier, having daily headaches, forgetting things, crying, sleeping some days 15-18 hours at a time (sometimes sleeping over 24 hours), falling asleep in the middle of a sentence and having migraines, nausea, stomach aches, bloody discharge from his eyes, very dark black circles around his eyes for days at a time, weight loss (food would taste funny for days at a time), incontinence, inability to find words, seizure like trances followed by post seizure-like behaviors, confusion and emotional outbursts on a regular basis (outburst are very uncharacteristic of Jake).

Over the last year, Jacob went through an endless battery of tests that did not yield a definitive diagnosis. An initial MRI of Jacobs brain identified an abnormality, but it is still unclear if it is a tumor, a rare disorder called abnormal brain migration or something altogether different. Jacob paid many visits to Dell Children’s Medical Center for an EEG, a gastric emptying test, a sleep test, an upper GI, a Lyme disease test and a second brain MRI. At the end of June, he will go back to Dell for another brain MRI, a spinal MRI, a spinal tap and a seizure study. Jacob will take a trip to Boston Children’s Hospital for further neurological tests, a second opinion and more treatment options.

Jacob still believes he can do anything. I don’t want him to lose his hopeful spirit, but it can’t last much longer under the assaults on his health and learning. He dreams of being a famous basketball player.

Maddie

By | Sustaining Champion Children | No Comments

MADDIE

AGE: 14

MOTTO: “Live Strong, Fight Hard”

CHAMPION TEAMMATE: Ashley Yarborough

CHAMPION HIGH SCHOOL TEAM: Cedar Park High School Celebrities

As a toddler, Maddie was often very sick. She had repeat sinus and respiratory infections, and when she was four years old, she had sinus surgery. Maddie remained relatively healthy for a few years after that, but then she developed a sinus infection that wouldn’t clear after 10 days on an antibiotic. Her ENT doctor put her on a 21-day course of sulpha drugs to knock out the infection. On day 19, she received a flu shot and within two hours had a high fever.

After one week, Maddie was hospitalized for Steven Johnson’s Syndrome. This disease occurs when the body doesn’t have enough immunoglobins to fight off infections. It affects the body anywhere there are mucous membranes present, both internally and externally, and causes a blistering rash inside and out.

Maddie received an implant to slow puberty down so she could grow. In the past five years, she has had three ports. They are supposed to last three years, but her body continually rejects them after roughly one year. The treatment for this disease is IV infusions. She has received one each month for the past five years. Chiropractic care helps prevent her from getting migraines and sinus infections. Her favorite quote is “Live strong, fight hard!”

She is partially homeschooled, but she’ll be spending a lot of time with her brand new “Celebrities.”

Chase

By | Sustaining Champion Children | No Comments

CHASE

AGE: 11

MOTTO: “Be Strong…Live Life”

CHAMPION TEAMMATE: Mark Henry “The World’s Strongest Man”

CHAMPION HIGH SCHOOL TEAM: Bowie High School Basketball

At six years old, Chase contracted bacterial meningitis. He had been playing football in the yard and within moments, had fallen into unconsciousness. With a three percent chance of survival, Chase stayed in a coma and on life support for 10 days with little to no brain activity. After miraculously waking up, it seemed his body had basically made a full recovery. Slowly, his doctors began to realize after repeated illnesses and infections that his body’s ability to make his own antibodies had been destroyed by meningitis. He basically no longer has his own immune system.

For the past four years, Chase has been under the care of the Infectious Department at Dell Children’s Medical Center. He receives an IV infusion every month. Each infusion is a mixture of 20,000 different donor’s antibodies, giving him the best chance of being able to fight the many germs he comes in contact with. Through trial and error, the staff at Dell has done an amazing job matching him with a donor pool that has little rejection on his part.

Chase has been given a broad diagnosis of Primary Immune Deficiency Disease. Doctors believe his disease is more specific and continue to work toward a more specific diagnosis.

Chase loves all things sports with basketball being his true passion.

JEREMY

By | Sustaining Champion Children | No Comments

JEREMY

AGE: 7

MOTTO: “Believe In Yourself”

CHAMPION TEAMMATE: Jeni Raymond: Boston Marathoner

CHAMPION HIGH SCHOOL TEAM: Regents School of Austin Football

After his eyes became shaky at three months old, Jeremy’s eyes stopped tracking movement one month later. Doctors in Houston and at the Cleveland Clinic weren’t successful in finding any type of diagnosis but warned his parents that he was quickly deteriorating and most likely would not live past one year.

At nine months, he had stopped smiling altogether and either slept or cried nonstop. A CT scan presented Jeremy with a craniosynostosis diagnosis. This is a birth defect that causes all of the skull plates to fuse together, preventing the skull from expanding to accommodate brain growth. Jeremy underwent surgery to relieve the cranial pressure at 13 months old, and his vision returned but his muscles remained extremely weak.

Doctors in Dallas, at the National Institutes of Health and Duke University guess that Jeremy has an endocrine disease because of the involvement of both bone and muscle. His condition causes his muscles to be so weak that he cannot walk, talk, sit or lift his head for long periods of time. He has constant headaches, nausea, neck and joint pain. Jeremy has had more than 40 surgeries, including five major skull surgeries, two heart surgeries and eight on his eyes. He taught himself to read and write, a huge surprise to his family. He works extremely hard at daily exercises to strengthen his muscles and is working hard to find an easier way to communicate with everyone around him.

CAROLINE

By | Sustaining Champion Children | No Comments

CAROLINE

AGE: 15

MOTTO: “No Fear”

CHAMPION TEAMMATE: Michelle Calaway: 2X WWE Champion, 2X WWE Champion Diva, Model

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Lacrosse

Caroline was born with Job syndrome, and at age three, officially diagnosed.

Job syndrome is a rare, inherited disease that is known to trigger problems with the skin, sinuses, lungs, bones, and teeth. It causes the skin to become covered in rash-like boils from head to toe.

For the first three years of her life, Caroline visited Texas Children’s Hospital, Mayo Clinic and an Immune Deficiency Foundation Conference hoping to obtain insight into immune disorders. She has had multiple pneumonias, surgeries and hospitalizations.

At school, she plays the violin, and she loves to cook and bake when she’s at home.

This year, she is a proud, new honorary member of the Georgetown High School Girls Lacrosse team… Eagle Fight Never Dies!

DREW

By | Sustaining Champion Children | No Comments

DREW

AGE: 16

MOTTO: “It’s Not Whether You Get Knocked Down. It’s Whether You Get Back Up”

CHAMPION TEAMMATE: Mark Calaway “The Undertaker” Wrestling Champion

CHAMPION HIGH SCHOOL TEAM: Hutto High School Football

Drew was diagnosed with juvenile arthritis when he was 11 years old. Nineteen months after the diagnosis, a series of illnesses led him to two more diagnoses—Lyme disease and occipital neuralgia.

Lyme disease is a bacterial infection spread through tick bites. Occipital neuralgia is chronic pain in the upper neck, back of the head and behind the eyes. It is caused by damage to the greater occipital nerve, a spinal nerve that affects blood supply to the occipital artery.

Tristan

By | Sustaining Champion Children | No Comments

TRISTAN

AGE: 11

MOTTO: “Don’t Survive, Live Life”

CHAMPION TEAMMATE: Mitch Gaylord

CHAMPION HIGH SCHOOL TEAM: Hutto High School Cheer

 

At 6 weeks old we were told that Tristan had a life threatening birth defect called intestinal malrotation; his entire digestive system failed to rotate in utero and thus was backwards. At 8 weeks old he underwent three surgical procedures including an appendectomy, a Ladd’s procedure, and a Meckel’s diverticulectomy. While the procedures could not correct the deformity, they would prevent further life threatening complications.

At 12 weeks old doctors began to suspect that something else was still wrong. We spent the next 3 ½ years watching Tristan’s health progressively decline as he underwent intense testing. One organ system at a time his body was shutting down until in January of 2009 our doctor shared that we needed to quickly find a diagnosis or we were going to lose our son. In February, an MRI revealed an incidental diagnosis of Juvenile Idiopathic Arthritis, and finally in March a diagnosis of Lyme disease was discovered. The Lyme was successfully treated, but he continues to deal with the JIA in his hips, knees, ankles, and TMJ. He’s had to fight since day one, but it has given him a tender heart and compassionate spirit. He pours 110 percent into everything he does and he simply loves life!

Noah

By | Sustaining Champion Children | No Comments

NOAH

AGE: 13

MOTTO: “Don’t Quit”

CHAMPION TEAMMATE: Garrett Salpeter

CHAMPION HIGH SCHOOL TEAM: McCallum High School Basketball

 

When Noah was diagnosed with scoliosis ten years ago at age three, it confirmed his diagnosis of neurofibromatosis, a genetic disorder that can cause tumors–usually nonmalignant–to grow at nerve endings anywhere in the body. There is no cure and no treatment. However, regular MRIs show it has grown but in a “good” direction where there’s “room.” If it starts growing into his spinal cord, he’ll have surgery to debulk that section, or risk paralysis. Since his diagnosis, we’ve always adjusted to “the new normal” as Noah has gone through bracing and serial casting that failed to stop the rapid and frightening progression of his scoliosis and an experimental drug trial that failed to stop the growth of his tumor.

At six, with all other options exhausted, Noah had two titanium rods implanted on either side of his spine to correct his severe scoliosis, to great success. All is going as well as we could hope with twice-a-year surgeries to lengthen the rods so that his spine can keep growing. In March he had his 13th rod expansion surgery. The treatment we had dreaded most turned out to be a godsend. With all he has to handle, Noah’s amazing spirit shines through. We hope his growing rods keep his spine straight until he’s ready for spinal fusion. We hope he doesn’t lose a
lung. We hope his plexiform neurofibroma doesn’t become malignant. We hope it stops growing. We hope he never gives in to despair, that he never loses his sparkle. We hope for a cure.


Joseph

By | Sustaining Champion Children | No Comments

JOSEPH

AGE: 5

MOTTO: “Live Life Full”

CHAMPION TEAMMATE: Betsy Hudson

CHAMPION HIGH SCHOOL TEAM: Regents School of Austin Basketball

 

Five years ago, Joseph was diagnosed with Prader Willi Syndrome, a rare genetic disorder. PWS is caused by a lack of a genetic material in a particular region of chromosome 15. Symptoms of PWS present a wide spectrum of challenges and are thought to be caused by a dysfunction of a part of the brain called the hypothalamus.  One of the stages is marked by the children having an insatiable appetite, since they lack the normal cues to “feel full”. Other issues include failure to thrive during infancy, cognitive challenges, motor delays, growth hormone deficiency/short stature, sleep disturbances, high pain threshold, infertility, morbid obesity, and increased risk of mental illness.

Joseph is an amazing little boy. We were told by a doctor after his diagnosis that he would not have much of a life and there was nothing they could do. Since it is so rare it does not get the exposure that many other genetic conditions do.  Joseph has been in therapies since he was 2 months old, doing OT, PT, Speech and horse therapy. He has worked so hard to move past his challenges and we are so proud of him.  Joseph has to follow a strict diet to make sure he stays healthy and safe.

Our hope and dreams for Joseph is for him to be able to live an independent life and to “Live Life Full”.

Hayden

By | Sustaining Champion Children | No Comments

HAYDEN

MOTTO: “Always Be Brave”

CHAMPION TEAMMATE: CB Hubson

CHAMPION HIGH SCHOOL TEAM: Lake Travis High School Football

 

Hayden has been diagnosed with Spina Bifida/Myelomeningocele: Spina Bifida (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US. SB occurs during the 4th week of pregnancy before many mothers know they are pregnant. In cases of SB, the spinal column fails to close properly which exposes the spinal cord to amniotic fluid. This exposure leads to damaged nerves. SB can occur anywhere along the spine – from the neck to the tailbone. The higher the defect occurs on the spine, the more severe the damage. Hayden’s level is L5-S1 which is considered severe.

Our vision is simple.  We want Hayden to be given the same opportunities as any other student in the school.  We want him to LIVE, LOVE & ACHIEVE whatever dreams that he wants.  It is important to us that Hayden be seen for what he CAN do & not for what he cannot do.  We want Hayden to reach his full potential academically & socially.  If his teachers & staff have high expectations for him, he will SUCCEED. Hayden loves to be social and loves being around people.  He has a big sister, Hanna (3rd grade) and a little brother Garrett (2.5yrs).  He has lots of friends and Hayden loves the ladies too.

Maddie

By | Sustaining Champion Children | No Comments

MADDIE

AGE: 7

MOTTO: “Listen, My Child And Be Wise, And Keep Your Heart On The Right Path ” Proverbs 23:19

CHAMPION TEAMMATE: Talaya Frazier

CHAMPION HIGH SCHOOL TEAM: Cedar Park High School Cheer

 

Since birth there were small things we noticed that were odd with Maddison. When she turned two we decided there was definitely something wrong and started our long journey of specialists. It was in Baltimore that a bone disease specialist confirmed that it was an unspecified bone disorder similar to Osteogenisis Imperfecta. Shortly after that we saw our 4th geneticist at Texas Children’s Hospital, who agreed. He helped us enroll in a Whole Exome research study through Baylor College of Genetics. Two years later we were finally given an answer. She has a de novo mutation (meaning neither mom nor dad have it) that they believe is causing her issues. To date she is the only one in the world with this mutation so there is no information on what this disease is or potential complications.

Over the last 4 years Maddie has had over 25 fractures, chronic pain and fatigue and other conditions to name a few. She has had over 10 anesthetized procedures in four years, and countless X-rays. She spent four years in speech, occupational and physical therapy. She has done two years of three day inpatient Pamidronte (osteoporosis medicine) infusions every three months to strengthen her bones and reduce pain. She is currently under the care of a pain management specialist to reduce her chronic pain. Overall, she is a happy healthy little girl who loves dancing and playing with her friends. She has an amazing personality and you would never know everything she’s been through.

Jacob

By | Sustaining Champion Children | No Comments

JACOB

AGE: 8

MOTTO: “I’m Not Afraid”

CHAMPION TEAMMATE: Bob Dorsett

CHAMPION HIGH SCHOOL TEAM: Lake Travis High School Basketball

 

Jacob is one of the kindest children you could ever meet. He always wants to do what is right. He refuses to lie, and he was born with a sense of honor that most adults do not have. His Kindergarten teacher recognized this and cared deeply about his welfare.

He did very well the first few months of school, but sometime between Halloween and Thanksgiving he started becoming clumsier, having daily headaches, forgetting things, crying, sleeping some days 15-18 hours at a time (sometimes sleeping over 24 hours), falling asleep in the middle of a sentence and having migraines, nausea, stomach aches, bloody discharge from his eyes, very dark black circles around his eyes for days at a time, weight loss (food would taste funny for days at a time), incontinence, inability to find words, seizure like trances followed by post seizure-like behaviors, confusion and emotional outbursts on a regular basis (outburst are very uncharacteristic of Jake).

Over the last year, Jacob went through an endless battery of tests that did not yield a definitive diagnosis. An initial MRI of Jacobs brain identified an abnormality, but it is still unclear if it is a tumor, a rare disorder called abnormal brain migration or something altogether different. Jacob paid many visits to Dell Children’s Medical Center for an EEG, a gastric emptying test, a sleep test, an upper GI, a Lyme disease test and a second brain MRI. At the end of June, he will go back to Dell for another brain MRI, a spinal MRI, a spinal tap and a seizure study. Jacob will take a trip to Boston Children’s Hospital for further neurological tests, a second opinion and more treatment options.

Jacob still believes he can do anything. I don’t want him to lose his hopeful spirit, but it can’t last much longer under the assaults on his health and learning. He dreams of being a famous basketball player.

Robert

By | Sustaining Champion Children | No Comments

ROBERT

AGE: 6

MOTTO: “Never Give Up, You Can Do This”

CHAMPION TEAMMATE: Heath Hale

CHAMPION HIGH SCHOOL TEAM: Hays High School Football

 

Robert was diagnosed with stage four high risk Neuroblastoma when he was nine months old. He had seven rounds of chemo, two tumor removal surgeries, a stem cell transplant, 12 rounds of radiation and six months of maintenance therapy. He is now happy to say that he has been cancer free for three years. Unfortunately the chemo that saved his life placed many other obstacles in his path. It left him with a severe speech delay and motor processing disorder. It also left Robert with scarring on his liver that needs to be watched carefully. The chemo caused damage to his bone marrow and some of his adult teeth. He is in speech and occupational therapy three times a week. Robert gets follow-ups from his radiation oncologist and oncologist every six months to make sure he stays healthy.

Through it all he always smiles and enjoys everything that life brings his way. He will start kindergarten in the fall, and he will be in speech through school two times a week to help him with words. His family’s favorite thing to see is his smile. To see him smile brings them so much happiness.

Emory

By | Sustaining Champion Children | No Comments

EMORY

AGE: 8

MOTTO: “Be Stong And Courageous”

CHAMPION TEAMMATE: Shannon Sarnella

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Football

 

Emory was diagnosed with an IgA deficiency at age 5.

As a young child, he underwent multiple surgeries related to ear nose and throat problems. After diagnosis, he started receiving IgG infusions on a weekly basis at home. He has struggled with feelings of isolation and had difficulty accepting that the treatment must continue indefinitely. His health problems have improved dramatically on this current therapy and he is leading an active life, with much less time spent dealing with infections. He loves to play outside, enjoys different sports and is active in Cub Scouts.  Academically, he is attending school every day and performing appropriately for his age. Because he has not spent much time around other children with unusual health issues, we are hoping he can be exposed to other children facing similar challenges.

Bryce

By | Sustaining Champion Children | No Comments

BRYCE

AGE: 7

MOTTO: “Don’t Forget To Laugh”

CHAMPION TEAMMATE: Jeni Raymond

CHAMPION HIGH SCHOOL TEAM: Leander High School Baseball

 

Bryce was born extremely premature and at home where his parents had to give their 1 1/2 pound, 12″ tall infant CPR until emergency responders arrived. From there Bryce spent the next 5 months in the Neonatal ICU at Dell Children’s hospital. He has endured numerous brain surgeries, countless therapies and visits to specialists ever since. When Bryce was 5, a routine MRI discovered that Bryce’s pineal gland, in the center of his brain, is enlarged to 2-3 times its normal size. Another routine test, an X-ray this time, discovered that Bryce’s hips are slowly but steadily dislocating. He will endure a 2 hour gait analysis this September at Texas Scottish Rite Hospital for Children in Dallas to determine if his back-kneeing can be surgically corrected. If that is deemed possible then Bryce will undergo that surgery at the same time that both of his hips are surgically repaired. Even though Bryce is non-verbal, to the befuddlement of his specialists and speech and language therapists, he is able to communicate many of his needs and desires through the use of a combination of signs and gestures. He tells us jokes and makes the people around him smile – Bryce is indeed a fighter and no matter how many times he has fallen, he always gets up with a smile on his face to try again.

Avery

By | Sustaining Champion Children | No Comments

AVERY

AGE: 13

MOTTO: “Life’s A Marathon, Not A Sprint”

CHAMPION TEAMMATE: Tanya Streeter

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Volleyball

 

As a small child, Avery had recurrent sinus and ear infections which would not clear up with antibiotics. She struggled with psoriasis which caused scaly patches to develop on her skin, and joint pain due to psoriatic arthritis. Around age three, she was diagnosed with common variable immunodeficiency (CVID) and began monthly intravenous immunoglobulin (IVIg) infusions. The infusions routinely caused aseptic meningitis which caused her to have severe headaches, nausea and vomiting. Avery had many sinus surgeries which included the insertion of multiple sets of ear tubes, a tonsillectomy, an adenoidectomy, a turbinate reduction and surgeries to the frontal and maxillary sinuses.

Avery is now 13 years old. She still gets monthly IVIg infusions but, with the help of post-infusion medications, she rarely suffers from aseptic meningitis. Avery has found that exercise is the best medicine (not to take anything away from her wonderful doctors). Avery has become an avid runner. She enjoys volleyball, and she completed her first triathlon.

CC4C