Our Miracle Kiddos’ Stories
Amy was born on July 29, 2005. Her parents are Gary and Judi and she has a brother named Ben. Amy was born with a congenital disorder called Sturge-‐Weber Syndrome (SWS). Amy has a Port Wine Stain birthmark on her head, face and neck; she has neurologic damage that makes her prone to seizures and strokes; she has glaucoma in her right eye; and she has developmental and speech disabilities. Amy spent a lot of time at the Children’s Hospital of Iowa during the first three years of her life as she suffered from multiple strokes and unending seizures.
She is much more stable today, although she will always be on anti-‐seizure medications as no surgical solution for her disorder is available. Amy sees several specialists at UIHC and has undergone eye surgery, facial laser surgery, lip reduction surgery, and radiation treatments for a mass at the back of her eye. She knows the Children’s Hospital well! Amy attends school in Ames in an integrated classroom. Her hobbies include playing in at the park, bouncing in bouncy houses, and dancing! Amy’s favorite colors are pink and purple, and she loves anything tied to Dance Marathon! Amy’s family is especially thankful for the love and support of Iowa State students and Dance Marathon!
At 20 weeks, Blake’s parents found out they were having twin boys. That same day, they also found out that one of the boys had enlarged kidneys, and a 10% chance of living. Despite these odds, both boys, Blake and Bowen, were born on April 8, 2011.
Blake spent 70 days in the NICU at University of Iowa Children’s Hospital. For the next 2.5 years, he did dialysis every night and continues to get all his meds and food through a G-Tube in his abdomen.
In November 2013, Blake received a kidney from a living donor named Steph. Steph found out about Blake’s situation via a mutual acquaintance through Facebook. After a long day in surgery for both Blake and Steph, the surgery was a success for both of them.
It was a rough five months post-transplant as Blake endured numerous complications and infections. Blake spent almost all of those first five months at the UICH. This little boy is a fighter though, and he continued and continues to persevere and beat the odds that have been stacked against him since birth.
These days, Blake and his siblings (Bowen, Brody and Jenna) enjoy their time together. Blake especially loves playing baseball, shooting hoops, riding in tractors and just being outside as much as he can. His labs and appointments at UIHC are farther apart than they ever have been, which is a great sign! The Burdorfs are so blessed to be a part of ISU dM and as always – #keepfightingblake and #builtblaketough!
Like her brother Nate, Brenna has Hirschsprung’s Disease. She was lifeflighted at 3 weeks old. She had all of her large intestine removed and 10 inches of her small. From that point, she was very healthy. However, she developed rare complications a few years later, so she had 5 surgeries on her intestines to reconstruct and make them functional again.
Now she is thriving! She returns to the hospital a couple times a year for procedures, but overall, she is healthy and stable.
She loves being a competitive swimmer and coming to DM every year with her siblings Nate, Elisa, and Luke!
When Bridgette was around 3 she presented with cold-like symptoms that lasted a couple weeks. After the incorrect diagnosis of a bad cold, the family eventually found out the reason: her lungs kept filling with fluid. Bridgette was taken to Iowa City where they ran tests and thought she had cystic fibrosis.
Bridgette has been sick with this lung problem for 9 years now. She has never had an official diagnosis. They have done tons of tests and many surgeries, including a surgery tying her stomach to stop acid reflux from spilling into her lungs. That didn’t help either, so it has been a very long haul for her. Her immune system is compromised due to this problem. A couple of years ago Bridgette got really sick with pneumonia, and she was hospitalized for 5 days. After that, Bridgette seemed to get a little better. The older she has gotten, the better she seems to be feeling.
Now she seems to only get sick a couple times a year with her lungs. Recently this summer Bridgette underwent a major 5 hour surgery of her spine. She had an entire spinal fusion from the start of her shoulder area all the way down to her lower back, she has scoliosis that took a turn for the worse and grew very fast to where they told her in May spinal fusion was needed. She had an 8-day stay at U of I hospitals in Iowa city and has a 6 month very strict recovery but is doing amazingly well. As of now they were able to correct her back to 0 degree she was at 55 degrees curve the day of surgery.
Dashiell – Angel Miracle Kid
Dashiell was diagnosed with a rare cancerous liver tumor called Hepatoblastoma. After multiple chemo therapies and surgery to remove the tumor at UI Children’s Hospital, he fell into a high-risk category for recurrence so we took him to specialists at Cincinnati Children’s Hospital. New tumors were found in his liver and he received a liver transplant there. After 2 months he was so happy he finally got to go home, he did a somersault on the living room floor!
During a routine scan nodules were found in his right lung and he underwent surgery to remove them. The next month showed new nodules in both lungs and they were removed as well. Pathology of the tumors tested as the more aggressive and extremely rare Transitional Liver Cell Tumor. Consulting Dr. Arthur Zimmerman, the Swiss pathologist to discover TLCT, it was confirmed to be this type of cancer all along. Dashiell then underwent 10 rounds of radiation and an experimental chemo. As with all of his treatments, Dashiell did not suffer. In fact, except for hair loss, he never endured the expected routine side-effects such as infection, mouth sores, nausea or fatigue and recovery from the all of the surgeries was without incident. Despite these efforts, he succumbed to this disease on 6/17/13 at 5 1/2yrs old. To ensure his journey was not in vain, his post-mortem tumors were donated to scientific research through UI Children’s, Cincinnati Children’s, the COG and SIOPEL. He is currently one of three worldwide confirmed cases of TLCT with data-banked bio-specimens.
Dashiell had a blessed life. He was as sweet and blissful as any child could dream to be — believing in Santa Claus, eating treats, cuddling Mama and Daddy (Pam and Brian), playing with his older brothers (Orson and Sumner) and hugging his doggie (Cider). He never knew one day of sorrow, neglect or abuse of any kind. He is very deeply loved and all of his days were full of pure happiness.
Dashiell’s indomitable spirit lives on in the hearts of his family, friends and supporters. His legacy will continue to be honored as our family advocates for childhood cancer awareness/projects/programs/organizations, better treatment options, advancements in higher cure rates and increased medical research funding. To learn more about Dashiell go here: https://www.facebook.com/DashiellsMahnaMahnaPage
Dillyn went from a normal healthy and active teenager to fighting for his life in a matter of minutes. January 9th, 2009 is when we first heard the awful “C” word. Our lives then changed forever… Dillyn, then 13 years old, was officially diagnosed with High Risk Pre B Acute Lymphoblastic Leukemia on Jan 12, 2009.
Spending the next 3 ½ years with daily chemo and several inpatient hospitals stays which included several different procedures. Seventy–nine days were spent in the hospital his first year of treatment where Dillyn underwent several different extremely harsh chemotherapies. Most of Dillyn’s High School days were spent in the hospital. He was not allowed to play the sports he loved, hunt or fish or even swim in anything that was not chlorinated because of fear of infections. Dillyn missed over 300+days of school but still graduated on time with the class of 2013 and maintained to have above a 3.6 GPA all through High School with some college courses. Dillyn had the will – the will to survive.
Dillyn finished his 3 1/2 yr treatment plan Mother’s Day (May 12, 2012) where we could then say he was in remission. He now has been off treatment a little over 4 yrs. (May 2017 Dillyn will celebrate 5 years off treatment where we can then we can say he will be cancer free!) BUT he will have to still be routinely checked for life and live forever with the fear of it returning. Just because a person is in remission or cancer free does not mean they have won the fight. They will continue to live their life in fear. Fear of the C word coming back, or all the side effects that come along with having chemotherapy.
Dillyn is currently in his junior year where he is making a name for himself at Iowa State (still a Hawkeye at heart forever) majoring in Aerospace Engineering. He has had internships, coops as well as started his own project at Iowa State where he is the lead for the “Eagle Eye” project. With determination, the will to live and pursue his dreams Dillyn Mumme WILL win this fight!
Ella was born with one ASD and two VSD (holes in the heart). Ella struggled with feedings and weight gain and saw a doctor every week. As she grew older, two of the holes in her heart closed on their own; however, the more concerning hole did not close. On October 10, 2012, Ella went up to Mayo Clinic to surgically take care of the last hole.
Since then, Ella has been given a clean bill of health and is enjoying a very active lifestyle. She now only has to go to the cardiologist once every three years. She often talks about how she misses going to see her cardiologist, Dr. Pyevich. We feel very fortunate to have such a wonderful UIHC Outreach Cardiologist in the Quad Cities, where we live.
Today, Ella loves going to kindergarten. She is our social butterfly. Everywhere we go around town she is always introducing us to friends that she knows from school. She enjoys participating in dance, tumbling, soccer, and t-ball. She equally loves all things princess and superheroes. Most of all, though, she enjoys spending time with her sister, Lilli, who is eighteen months younger than Ella.
Everyday we feel so blessed and fortunate for her health and happiness. We cannot thank Dance Marathon enough for everything that they have done for Ella and all the children.
Gabe is an energetic 6th grade boy who loves to swim, give hugs, read books, and cheer on the Hawkeyes (Sorry, ISU DM Family!). Before he was born, he was diagnosed with Hypoplastic Right Heart Syndrome. Gabe’s right ventricle never fully developed, so he only has 1 pumping chamber in his heart—effectively half of a heart. This defect is corrected with a series of 3 open heart surgeries—one at birth, one at 6 months old & one between 2-5 years old. We were fortunate that Gabe was able to wait for surgery until 6 months old and 2 ½ years old. He recovered well from both except for a stroke following the 2nd surgery which paralyzed his left side. He has almost fully recovered from the stroke but has significant weakness in his fine motor skills with his left hand and foot. In 2015, Gabe started having seizures as a side effect of his stroke. While we have been able to manage the seizures using medication, it has added some stress and complications to his health care. We are so thankful that he only has to see his cardiologist once a year.
Tessa welcomed Gracie into the world with 4 older siblings all excited for their new baby sister. Gracie was born with congenital heart defect, thyroid and Down Syndrome. Although they have endured many struggles, Gracie now sees a heart doctor yearly and a GI specialist for abdominal pain. She currently is doing great and lives an active life. Gracie enjoys cheerleading and playing with her 5 siblings.
Jacob was a micro-preemie born at 25 weeks, weighing just 1 pound 5.5 ounces. His lungs were not developed, so he was on various ventilators for 2 months before working his way down to oxygen. He came home on oxygen and remained on it until 12 days before he turned 2! When he was 7 months old, he was diagnosed as “failure to thrive.”
Basically all of his calories were going toward his breathing and not his growing. He had a gastrostomy tube (g-tube) placed which goes into his stomach and to which a pump is hooked up to give him his nutrition directly into his stomach. Over the last four years, Jacob has been going to feeding therapy in order to work through his oral aversion, increase his oral intake, and decrease his tube feeding. As of July 2015, Jacob is not using his g-tube at all any more! If he is able to maintain his weight without it, he will have it for another 6-12 months before his Peds Gastroenterologist will remove it! Jacob had retinopathy of prematurity when he was in the NICU, but now he’s just followed yearly by ophthalmology. He also sees ear/nose/throat every 6 months since got tubes in his ears in 2012. We are so thankful for the doctors and nurses who have taken such good care of Jacob since his early arrival!
On August 16th, 2004 Jacob was burned by climbing up onto a gas stove, resulting in burns that cover 31 percent of his body. Since that day, Jacob has been put under anesthesia 18 times. He is now able to do everything he wants. He is involved in swimming lessons, rides his bike, plays soccer, and likes to hang out with brothers and friends.
When Jayden’s family underwent a routine prenatal examination, they learned that Jayden may never walk. Jayden was born with several life-‐threatening conditions: Myelomeningocele (spina bifida), Hydrocephalus (water on the brain) as well as clubbed foot. He was in and out of surgery often within his first two years of being born. Near age 2, Jayden’s family noticed discomfort whenever his diaper needed to be changed. He was taken into surgery and it was discovered that he had Bilateral Hip Dysplaysia. After surgery Jayden was placed in a Spica Cast for 3 months. However Jayden didn’t care one bit! He would use the top of his cast as pockets and shove anything and everything he could into it. He even began wearing out his cast; he would crawl around so much!
At age 2 Jayden began taking his first steps with the help of his AFO’s (ankle foot orthosis) and his walker. By age 3 he was able to begin using forearm crutches. When he turned 4, Jayden had surgery on his bladder and bowels. After several painful weeks, he was able to get out in time to celebrate his 5th birthday! In kindergarten, his family learned that Jayden had a tethered spinal cord. He had a 14-‐hour surgery, but immediately bounced back. You can’t slow Jayden down!
Jayden had surgical treatment for his clubfoot again on March 4th, 2014. In this surgery, the doctors had to remove pins they had placed previously in his hips. Unfortunately this meant Jayden had to stay on complete bed rest for 6 weeks.
In Jayden’s free time you can find him pulling pranks on his parents, playing basketball, or just being his goofy self!
Khloe had a rough start to life. She was born healthy and everything went well her first five days of life. On day 6, she developed a high fever and was immediately hospitalized. She ended up being diagnosed with viral meningitis. Her parents were told there could be complications later in her life from the high doses of antibiotics given when she was sick. Everything was fine until she was 6 months old. She then again developed a high fever and was first diagnosed with a urinary tract infection. Antibiotics were prescribed and the infection went away, at least until the antibiotics were stopped. Her fevers returned and she was eventually diagnosed with a severe kidney infection.
More tests were done and she was finally diagnosed with vesicoureteral reflux disease. Her ureters were not formed properly and would eventually have to be reimplanted with surgery. Khloe was put on a daily dose of antibiotics for the next year, until she had surgery to reimplant both her left and right ureters. Khloe’s first kidney infection damaged a good part of her left kidney and so it is important for her family to be watchful of infection to prevent further damage. So far she has been very healthy and she has check-ups every five years in Iowa City.
Today, Khloe is a vibrant, active girl. She loves singing and dancing, roller derby, and swimming.
Our sweet Malcolm is a young boy of many hats. His favorites are Superman, train conductor, and his 6 siblings. At the age of four he was diagnosed with stage IV Neuroblastoma (a cancer that originates in the abdomen and spreads through the nervous system) with 100% infiltration in the bone marrow. He has since undergone high-dose chemotherapy (10 rounds), surgery, radiation, and clinical trials of immunotherapy (10 rounds). His cancer has proved to be very resistant to treatment, but the immunotherapy proved effective and he has been NED (no evidence of disease) for almost 2 years! Malcolm is 8 now and loves those times that he can be home. We are thrilled that he is doing so well. He is now in 2nd grade at Gilbert Elementary and he loves learning.
When Matthew was born one month early on in 2006, he was diagnosed with Hirschsprung’s Disease. He then had 10 inches of his large intestine removed. Every day he deals with sensory issues, food allergies and low muscle tone. Now Matthew is 10 years old and is extremely active! He enjoys any sport with a ball, hanging with his big brother Timothy, playing video games on other people’s phones and just being an active, normal kid!
Mikayla was first seen by Dr. Buckwalter in orthopedics after we found out she had a tumor in her pelvis. He scheduled a needle biopsy of the tumor but after two attempts he decided that surgeons needed to open her up and get samples. Her 6 hour surgery and 6 day hospital stay with a 6 inch incision got us the 100% diagnosis of ewings sarcoma but we also found out from that hospital stay that the cancer had spread to 6 tumors in her lungs as well. Mikayla had stage IV ewings sarcoma.
Nate has Hirschsprung’s disease, a birth defect of the bowel. He has spent numerous days in the UI Children’s Hospital and has had over 30 operations related to his central line and intestinal condition. He has had all of his large intestine and great portions of his small intestine removed.
ISU DM has provided hours of entertainment and medical technology for him and he looks forward to hanging out with his DM friends every year with his siblings Elisa, Brenna and Luke! He enjoys being in 4H and cheering for the Hawkeyes!
Nolan was born at 29 weeks and weighed 3lbs 2oz. At 10 days old he became very ill with Necrotizing Enterocolitis. This infection caused him to lose his entire large intestine and also caused a Grade III Brain Bleed, which in turn, damaged a portion of his brain. Nolan spent much of his first year of life in the hospital and has had multiple surgeries and procedures. Nolan has been diagnosed with Cerebral Palsy. He uses a wheelchair and can walk in a walker with assistance. 4 years ago, Nolan started having seizures and has been diagnosed with Intractable Epilepsy. Nolan is also cognitively impaired due to the brain damage he suffered at 10 days old. Despite all of Nolan’s challenges, he is a sweet and happy 9 year old boy who is in 3rd grade. Nolan loves tractors and trucks. He also loves playing with his siblings.
Patrick was born with a congenital heart defect called tricuspid atresia (he is missing the right half of his heart). In Dec.2000, Patrick had his 1st open-heart surgery at Mercy hospital in Des Moines. He did very well following this surgery. In Jan. 2002, he had his second open-heart surgery at Mercy.He developed a severe complication from surgery and spent 5 months at Mercy before being transferred to University of Iowa Children’s Hospital. Patrick spent the next 3 months there undergoing multiple life threatening incidences and surgeries. Miraculously, he pulled through and slowly became healthier! Patrick is now 13 years old and in the 7th grade. He is a huge Brewers baseball fan and enjoys playing with and making videos on his Nintendo 3DS, and playing with the family’s three dogs.
Quinn – Angel Miracle Kid
Quinn was diagnosed with an inoperable brain tumor in March 2011 at the age of 7 1⁄2. The treatment he received at the University of Iowa Children’s Hospital included radiation and chemotherapy. In addition, the side effects of these treatments resulted in complications that led to further hospitalizations. Quinn fought his battle against cancer for 5 months and in September of 2011, he received his angel wings. We appreciate all that Iowa State Dance Marathon has done for our family and all other Miracle Families.
Like his brother, Orion, and sister, Payton, Quinn enjoyed playing hockey. In the Fall of 2011, the Ames High School hockey team sponsored the first Quinn’s Quest Benefit game in Quinn’s honor.
Reese was born on May 19, 2009 in Ames, IA. At birth they noticed a bump on her back and she was transported to UICH at three hours old. She had surgery that day to remove and repair a Lipomyelomeningocele (spinal cord tumor). The tumor disrupted the nerves controlling organ function in parts of her body. She sees three specialists at UICH and has routine sedated scans and tests to monitor what remains of the tumor and to monitor the function of her organs. Reese has been inpatient on five different occasions for surgeries and infections. She competes hour long treatments each day to keep her body healthy and happy. We are thankful for UIHC for keeping our girl happy and healthy. And we are thankful for Dance Marathon. We feel tremendous support and love from our DM family.
Sarah is a bright and intelligent young lady but has been faced with several challenges throughout her life. At birth, Sarah spent 10 days in the NICU for not holding her oxygen levels up. She was sent home in a special car seat/bed as she could not hold her head up well enough to breathe. After several visits to the doctors Sarah was diagnosed with CFTD (Congenital Fiber Type Disproportion), a very rare form of muscular dystrophy.
In 2006, Sarah aspirated while drinking water. A tracheotomy was recommended, but the family went to University of Iowa Children’s Hospital (UICH) for a second opinion. Before getting the opinion, Sarah stopped breathing and was moved to the PICU, where she was placed on a Bi-PAP machine for the night. Later, Sarah stopped breathing again, her heart stopped and right lung collapsed. The nurses and doctors at UICH saved Sarah’s life. The tracheotomy was done a few days later and then a nissen was done (stomach was tied smaller to keep her from vomiting). She was in the UICH for 3 months.
Sarah has very little strength in her head and neck and cannot stand, walk or even crawl without assistance. But that has not slowed her down! Sarah is a happy 11 year old who is extremely successful with her schooling and loves to learn! She enjoys Super Heroes and spending time with her family and two dogs.
Right after Sophia was born, she was diagnosed with a heart murmur. Sophia was sent to see a specialist at Children’s Hospital of Iowa where she was diagnosed with two holes in her heart. Sophia had surgery to repair the holes in July of 2003. In addition to fixing the holes, the doctors found a 3rd condition, aortic stenosis, and fixed that too.
She had her 2nd open-heart surgery in May of 2004 because the stenosis had come back. Sophia is now doing wonderful and only has to get check-ups every now and then.
Suzie is a 12 year old battling Alobar Holoprosencephaly and Severe Hydrocephalus. Basically, Alobar Holoprosencephaly is when the right and left brains cannot form into two sections; instead, it is one big brain. This causes defects in the face structure. Severe Hydrocephalus is when there is an abnormal amount of cerebrospinal fluid in the cavities of the brain. This causes the brain to enlarge and causes mental disabilities. Suzie continues to amaze everyone as she keeps beating the odds and doing things doctors never thought she would be able to accomplish. She truly is a miracle child who keeps proving to the world that she is here to battle and beat the odds.
When Timothy Weber was born 29 weeks premature, he weighed only 3 lbs. and 10 oz. and had lungs comparable to the lungs of a sick 80 year old. After spending months in the Iowa City NICU he was able to go home, where he was carefully monitored. He continued to have monthly check ups in Iowa City until he was 5 years old. Now Timothy is 15 and is very active in sports like hockey and basketball. He also enjoys Boy Scouts, playing with his little brother Matthew and being a normal kid!
Trinity was born healthy, but developed serious problems shortly after she was born including a fast heart rate, an abnormal thorax, a bubble next to her left lung and pulmonary hypertension, which meant her blood was not getting enough oxygen. After crashing multiple times, she was life-flighted to Iowa City. She made a miraculous recovery and after her collapsed lung had healed.
Trinity was a perfectly healthy baby. She is 13 years old now and she is not on any current treatment. She enjoys singing, dancing, riding bikes, rollerblading, and her favorite holiday is Halloween.
Will was born prematurely and was diagnosed with hip dysplasia and early lung disease due to premature development of his lungs. He had hip surgery to treat his hip dysplasia at the University of Iowa Children’s Hospital on March 31, 2011. His lungs continue to get better as he gets older and as his lungs get stronger. His current treatment is regular followups at the University of Iowa Children’s hospital for his hips, lungs, and eyes. Also, his parents work very hard on not exposing him to illnesses as his immune system is still working hard. Will enjoys anything relates to car or plane, books, swimming and playing with his family. He loves animals, pirates and Disney!
He was a huge heart as he always wants to take care of those around him. He is a happy little boy with a contagious smile and laugh!