CHAMPION CHILDREN

Our champion children are the entire reason our organization exists! This season, we will focus on these 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.  
2016 – 2017  Champion Children

 

Avery

 

AveryAGE: 13

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

CHAMPION TEAMMATE: Tanya Streeter

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Volleyball

TEAM AVERY FUNDRAISING PAGE: Click Here

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. 

Bryce

 

BryceAGE: 7

MOTTO: “Don’t Forget To Laugh”

CHAMPION TEAMMATE: Jeni Raymond

CHAMPION HIGH SCHOOL TEAM: Leander High School Baseball

TEAM BRYCE FUNDRAISING PAGE: Click Here

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.

 

Emory

 

EvelynAGE: 8

MOTTO: “Be Stong And Courageous”

CHAMPION TEAMMATE: Shannon Sarnella

CHAMPION HIGH SCHOOL TEAM: Georgetown High School Football

TEAM EMORY FUNDRAISING PAGE: Click Here

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.

 

 

Robert

 

RobertAGE: 6

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

CHAMPION TEAMMATE: Heath Hale

CHAMPION HIGH SCHOOL TEAM: Hays High School Football

TEAM ROBERT FUNDRAISING PAGE: Click Here

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

 

JacobAGE: 8

MOTTO: “I’m Not Afraid”

CHAMPION TEAMMATE: Bob Dorsett

CHAMPION HIGH SCHOOL TEAM: Lake Travis High School Basketball

TEAM JACOB FUNDRAISING PAGE: Click Here

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

 

MaddieAGE: 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

TEAM MADDIE FUNDRAISING PAGE: Click Here

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. 

 

 

 Hayden

 

ChaseAGE: 7

MOTTO: “Always Be Brave”

CHAMPION TEAMMATE: CB Hubson

CHAMPION HIGH SCHOOL TEAM: Lake Travis High School Football

TEAM HAYDEN FUNDRAISING PAGE: Click Here

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. 

 

Joseph

 

JeremyAGE: 5

MOTTO: “Live Life Full”

CHAMPION TEAMMATE: Betsy Hudson

CHAMPION HIGH SCHOOL TEAM: Regents School of Austin Basketball

TEAM JOSEPH FUNDRAISING PAGE: Click Here

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”.

 

Noah

 

CarolineAGE: 13

MOTTO: “Don’t Quit”

CHAMPION TEAMMATE: Garrett Salpeter

CHAMPION HIGH SCHOOL TEAM: McCallum High School Basketball

TEAM NOAH FUNDRAISING PAGE: Click Here

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.

Tristan

 

DrewAGE: 11

MOTTO: “Don’t Survive, Live Life”

CHAMPION TEAMMATE: Mitch Gaylord

CHAMPION HIGH SCHOOL TEAM: Hutto High School Cheer

TEAM TRISTAN FUNDRAISING PAGE: Click Here

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!