Hi, my name is Lily.
Motto: Never Give Up
Champion Teammate: Cassie Ford
High School Team: Bowie Silver Stars
As a small child, Lily was developmentally delayed and had a difficult time eating. She learned to roll over at 11 months and was delayed with crawling and walking. At age two, she ended up in the ICU in metabolic acidosis. Doctors searched for answers to Lily’s metabolic issues for over six years. In February of 2018 she was diagnosed with a mitochondrial disease after a muscle biopsy. Her genetic link is still unknown and the doctors are still looking for answers. Lily is often hospitalized when she is ill because she can become acidotic. If left untreated, this could cause a coma or death.
Lily had whole exome sequencing done, which uncovered several gene mutations unrelated to the mitochondrial disease, including one on her RYR1 gene and a surprising one on her ADNP gene that she shares with her twin brother. That led to Lily and her twin being diagnosed with an extremely rare genetic syndrome called, ADNP syndrome.
To date only 165 people have been identified with ADNP worldwide. In 2017 Lily was diagnosed with epilepsy. She has scapular winging, and muscle weakness in her core. Additionally, Lily has malignant hypothermia (MH) susceptibility due to her RYR1 mutation. Doctors will have to take special precautions during any surgical procedures and she also shows symptoms of awake MH. MH can be deadly. Lily’s conditions cause her to overheat quickly, fatigue easily, and she has to have a cool place to go when it’s hot outside. Lily has cognitive impairment and receives special education services at school. Lily attends PT, OT, and speech therapy weekly. Despite her struggles, she is a happy brave girl and rarely complains.
Hi, my name is Braden.
Motto: Smarter Than You Think
Champion Teammate: Scott Hatch
High School Team: Hays Baseball
I was born at 34 weeks by emergency c-section with central hypotonia (low muscle tone, extreme head lag), no suck, swallow, gag or cough reflex (dysphagia), neonatal encephalopathy, severe developmental delay, optic nerve hypoplasia (ONH), hypermetropia, astigmatism, staring spells, head “spinning”, cortical visual impairment, intermittent extropia, 50% bilateral conductive hearing loss before PE tubes, 20-30% loss after PE tubes (chronic purulent otitis media, actute otitis media), tracheitis, gastroesophageal reflux disease, micrognathia (small, set back jaw), a strong, left cavovarus foot deformity, generalized convulsive epilepsy, epilepsy characterized by intractable complex partial seizures, and unfortunately, I am still undiagnosed with some sort of neuro-metabolic disorder/infantile cerebral palsy.
My good news includes the fact that I am still alive, happy and walking at ELEVEN years old this past November! I enjoy bath time, going to the beach, so I can feel the waves crash up against my belly and wiggling in the sand. I also love to swing in circles and throw rings to my nurses, teachers, therapists, mom, dad and Grandma. I also take pleasure in watching cartoons and game shows.
My mom, Crystal, is also a pretty big advocate for me and other friends like me who need Medicaid and support services to survive at home and in the public school system. My mom fully believes in these words from her favorite poem: “I asked God to take away my pain. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No. His spirit was whole, his body was only temporary.”
Hi, my name is Reid.
Motto: Building Strength
Champion Teammate: David Mebane
High School Team: Dripping Springs Baseball
Reid was diagnosed with x-linked Creatine Transporter Deficiency (CTD) at age 2-½ after searching rigorously for answers to his unexplained symptoms. He battles daily with muscular and movement disorders, global developmental delay, expressive language delay, intellectual disability, autistic behaviors, and seizures.
Reid’s disease impacts the whole family as we struggle to cope with the long-term mental and physical effects. CTD is a rare, untreatable, disorder and one of three cerebral creatine deficiency syndromes.
He will live a life of constant care, but he will smile, and play and love. He infects us with his energy and brings us joy.
Hi, my name is Sophia.
Motto: Look on the Bright Side
Champion Teammate: Talaya Frazier
High School Team: Dripping Springs Cheer
Sophia was diagnosed at 4 years old with congenital Ullrich Muscular Dystrophy. This is a rare progressive disease that causes muscle wasting. We soon learned that she would be confined to a wheelchair, require a feeding tube and respiratory support, surgery to correct scoliosis and full time aid to help with all her daily activities.
There wasn’t a cure, but we knew that anything was possible. We decided to believe in miracles and work towards that. As long as it couldn’t hurt Sophia we were willing to try it. We made it an adventure and started with a stem cell treatment, and immediately started seeing positive changes in Sophia. Instead of getting weaker, she started getting stronger, and her pain had also improved. Since then, we have added serial casting, physical therapy, chiropractic care, swimming, horse therapy, massage, hyperbaric oxygen chamber, electro-stimulation biofeedback therapy, vitamin infusions and dietary changes.
In spite of all the challenges that Sophia has had, she is an incredibly happy and loving girl. She is selfless, compassionate and has a tender heart that seeks peace all around. Strong, determined, and hard working, Sophia is an inspiration to us all. She was born on Valentine’s day and truly is all about LOVE.
Hi, my name is Nina.
Motto: Joy and Love
Champion Teammate: Jeni Raymond
School Team: Trinity Episcopal Volleyball
As a baby, Nina missed every milestone, and by 7 months, we had her in every kind of therapy we could think of – PT, OT, and aquatherapy. After years of extensive testing that had not provided us with an answer, this fall, we were able to have the whole exome test done, and Nina received her diagnosis in January. She has a rare, non-inherited genetic disorder caused by a mutation on the STX BP-1 gene.
This disorder doesn’t have a catchy name – it’s simply called STX BP-1. The gene was identified in 2008, and there are only about 300 reported cases worldwide to date. Most of what is known is anecdotal, and there is a dearth of research and knowledgeable specialists. STX BP-1 is responsible for producing a protein that controls how neurotransmitters are released; because of her mutation, Nina’s neurotransmitters are not firing correctly, leading to significant intellectual disabilities, gross and fine motor difficulties, and some sensory issues. Nina requires constant supervision since she is essentially a young toddler with no sense of danger. She is non-verbal, but has some ASL signs and is able to communicate a great many things with her own unconventional system of gestures and noises.
Our Nina is loving and affectionate, joyful and happy. When she was two and a half, she took her first steps and hasn’t stopped moving since; she runs, she jumps, she climbs, and she’s fast! She is quite mischievous and is able to reach things that are seemingly out of her reach in the blink of an eye, earning her the nickname “Nina the Ninja.” She loves hugs, silly noises, Curious George, swimming, stuffed animals, musical theater, and our family dog.
Hi, my name is Greysen.
Motto: Your Voice is an Art
Champion Teammate: Kaitlin Harty
Greysen has a history of chronic illness since birth. Many bouts with croup, inflamed airway disease, chronic ear and sinus infections, unusual allergies and GERD. Greysen also had a significant speech disorder and social anxiety. Doctors weren’t sure why she was having so many continued health issues and not outgrowing them as expected. Tested for Cystic Fibrosis three times with no answers, we treated symptoms while searching for answers.
Greysen always has had an amazing zeal for life despite having to learn to adapt and continues to do so. She stopped riding her bike and participating in many activities at 6 or 7. She would trip and fall at school or with friends starting around 9 or 10, but it was never realized until two years ago when she became confined to a wheelchair that she was losing feeling and control of her legs all along. Currently she has bilateral loss of sensation in both legs and some loss of sensation in her right arm and hand. Greysen also developed irregular blood sugars, tremors, joint pain, migraines and extreme fatigue. We are still searching for underlying causes and an ultimate diagnosis.
Greysen is enrolled in a genetic study and has spent much of 2018 in the hospital, but we are hopeful in her progress. Currently, Greysen’s doing physical therapy and occupational therapy while preparing to return to finish high school. She has been diagnosed with dystonia, gastroparesis, and a very severe case of dysautonomia.
Greysen is passionate about animals and has a keen connection with them. She fosters kittens, puppies and loves training horses. She also fills her free time with art, volunteering at church, and reading.
Hi, my name is Alaina.
Motto: Hope. Strength. Drive.
Champion Teammate: Stephanie Wendt
High School Team: Lake Travis Volleyball
When Alaina was 6 months in utero the doctors said they didn’t know what was wrong but that they couldn’t find her fingers in the ultrasound. Alaina was born at 36 weeks with a healthy heart and lungs and a calm demeanor, but with finger amputations, a club foot, anencephaly, and partial blindness. Her diagnosis’s umbrella under Amniotic Band Syndrome.
She spent the better part of the first 7 years of her life in and out of hospitals as her list of diagnoses grew. In addition to her birth diagnoses she now has epilepsy, scoliosis, developmental delays/disabilities, a speech impediment, severe anxiety, and is not expected to mature beyond her mental age of around 5/6 in most areas.
There isn’t a day that goes by that we don’t wake up worried about if she made it through the night. Her epilepsy has the potential to take her away from us in one way or another but we are fortunate so far that she has been seizure free for 2.5 years! However, because of the structure of her brain, she will always have it.
Every day we learn something new about Alaina, and every day is a journey to understand her and what will happen next. We don’t know if she’ll ever be able to live on her own, but it’s important to us that she feels love and support and is surrounded by friends and family. She loves babies and helping the elderly, and her hobbies involve gymnastics, art, and anything girly!
Hi, my name is Alexis.
Motto: Never Stop Trying
Champion Teammate: Karen Quintos
High School Team: Lake Travis Cavalettes
Alexis was born with a visual impairment, and facial weakness. We enrolled her in a study at Boston Children’s Hospital when she was 3 months old. At the age of 7 she was diagnosed with CFEOM (congenital fibrosis of the extraocular muscles), now defined as TUBB3 E410K syndrome.
There are less than 30 known cases in the world. Doctors are still learning a great deal about this genetic condition, but they have linked it to cyclic vomiting syndrome (CVS), Kallman’s syndrome, and peripheral neuropathy. In the last 1 ½ years, Alexis has unfortunately developed the symptoms of cyclic vomiting.
Currently there is no cure, or even great treatment options for CVS, and Alexis often requires IV fluids and meds when she has an episode. Despite all Alexis has been through, she has the most positive attitude and is a kind and caring person. We remain hopeful for more information on this condition and better treatment options, or a cure in the future.
Hi, my name is George.
Motto: My Soul is Always Singing
Champion Teammate: Allison Miller
High School Team: Lake Travis Theatre
From the time George was able to speak, he complained that his legs and ankles hurt. By the time he was 18 months old, he would complain of pain three to five times per week, and at times, refuse to walk. We were reassured by both a pediatrician and an orthopedist that this was just “growing pains”. At 5 years old, the pain was so intense that he refused to walk which led to some x-rays that showed all was “normal”.
George’s pain continued over the next several years, flaring before illnesses, as we continued to search for answers. After 8 years of looking for a reason behind the pain and demanding more testing, an orthopedist working with a rheumatologist did full body bone scans and two critical blood tests. George’s blood tests were both positive. His ANA was high indicating inflammation in his body and his HLA-B27 was positive, a potential genetic marker for juvenile idiopathic arthritis (JIA) with potential ankylosing spondylitis.
JIA is an autoimmune and inflammatory disease leading to joint swelling, stiffness, and pain that does not go away. Ankylosing spondylitis is an inflammatory arthritis affecting the joints of the spine and the pelvis. George is a bright, enthusiastic boy, still enduring many rounds of blood testing, scans, and treatments, looking for more answers. Despite George’s set backs his soul is always singing!
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.
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.
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.
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.”
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.
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.”
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!
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.
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
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.