Interested in becoming one of our sponsored families?
Tell us about your personal experience at University of Iowa Stead Family Children's Hospital! A member of the Children's Miracle Network staff or a member from the Dance Marathon(s) that you select below may contact you to ask for your permission to share your story. You also may be asked to become a designated Miracle Family for one or all of the Dance Marathon programs that you will select below.
By sharing your story with us, you will help us tell others about UI Stead Family Children's Hospital's life-saving work and encourage student participants to raise money to benefit families like yourself being treated at UI Children's Hospital. Thank you and FTK!
Contact Rachel Clennon at [email protected] for more information about sharing your story.
Koryn was diagnosed at age 2 months with HLH and received an umbilical cord stem cell transplant (bone marrow transplant) at age 7 months to save her life. U of I Children's Hospital is amazing and I can honestly say, I do not think my daughter would be here today if it were not for them.
Jada was born With atresia of her right ear and diagnosed with a mild hearing loss. Just before Jada’s first birthday on May 7, 2001, she contracted meningitis and was hospitalized for î() days. During that time she had multiple seizures, one which lasted over 45 minutes. At that time We were given the impression that she would not survive, because they had given her so much medicine and the seizure was not stopping. After the seizure finally stopped, Jada was in a medically induced coma for 2-3 days. Miraculously, Jada came out of the coma and we were able to take her home several days later. It was like taking home a baby from the hospital for the first time. Jada could not walk, talk, pick up toys, hold a bottle, etc. She had to relearn all the things that she was doing before the meningitis. During a visit to the doctor was when we questioned her hearing. After failing several hearing tests, we were referred to University of Iowa Children’s Hospital in Iowa City. We met with several doctors, audiologists and speech pathologists. After several long discussions, we decided to have Jada receive a Cochlear Implant. It was a difficult decision to make, but yet is wasn’t. We are from a hearing family and community and we Wanted Jada to fit in as normal as possible. Jada’s cochlear implant surgery was in August 2001, and at that time, Jada was one of the youngest cochlear implant recipients in the nation. Jada did not like the cochlear implant at first. It was quite an adjustment for all of us. We hit a road block with the implant later that fall when Jada came down with a severe case of anemia. Jada was hospitalized at University of Iowa Children’s Hospital for several days and received several blood transfusions. Once we got Jada healthy again, we had appointments with the doctors in the University of Iowa’s Cochlear Implant Program several times a month for tune-ups and speech therapy. Eventually, as Jada got used to the implant, we were able to reduce our appointments to monthly, then quarterly, then semi-annually. Now we visit on an annual basis for tune-ups and other appointments necessary for the research program that Jada is a part of.
Jada is now a 7th grader at Decorah Middle School and is in mainstreamed classes with the help of an interpreter. Most people don’t even know that Jada is deaf, as she talks very well and can carry on most conversations. Because Jada hears so well with the cochlear implant, we don’t use sign language at home. Jada has now had her implant for 12 years and is probably the healthiest child you will ever meet. She can do all the same things that other 13 year old girls do, and the implant does not slow her down. She truly is a miracle, thanks to all the wonderful doctors at University of Iowa Hospitals & Clinics.
Stella is currently a miracle child as part of Central's DM but we have a friend at Luther College that asked if we would be interested in sharing our story there. Stella was diagnosed at one month of age with SMA Type I and Mayo Clinic literally told us there was nothing we could do and her prognosis was "weeks or months". Today she is 6 1/2 years old and goes to school with her nurse. While she has a lot of equipment that goes with her, she's a happy little girl! We have spent a lot of time at UIowa Hospitals seeing 10 different departments and some are regular visits. Stella was selected as a U. of Iowa Hawkeyes Kid Captain this fall which was so much fun for our family!
Theodore was diagnosed early 2011 with rhabdomyosarcoma when he was 4 going on 5-years-old and went through 6 months of chemo at the University of Iowa Hospitals in Iowa City, IA. He is currently in remission and goes for CT scans, x-rays, and blood work every 6 months. The U of I did a great job and we appreciated all the support of Dance Marathon!
On March 2, 2012 Dashiell was diagnosed with a rare cancerous liver tumor called Hepatoblastoma. After several months of multiple chemo therapy drugs, his tumor was not shrinking and with a rise in his AFP level (the marker that determines tumor activity) he underwent a trisegmentectomy to remove it. Despite its success, he still fell into a high-risk category for recurrence based on his chemo-resistance, so we took his treatment to the world's leading doctors for this type of cancer at Cincinnati Children's Hospital. He was prescribed a treatment plan that no other child was on in the nation (besides clinical trials). On the first day on his last round his AFP was found to have risen substantially. Two new tumors were found in his liver and he was immediately placed on the transplant list. Three excruciating weeks later the call came and he took a private jet from Iowa to Ohio. The surgery was without complications. He spent two weeks inpatient and five weeks at the local Ronald McDonald House recuperating. Going home to his brothers and sweet doggie Cider made him so happy, he did a somersault on the living room floor! During his next visit the unthinkable happened...a nodule was found in his lung during a routine CT scan. The cancer had metastasized. One week later that too was successfully removed and he was on the road back to Iowa within 36hrs. The doctors felt he was at even greater risk now as every time the cancer recurred he was on a more and more potent chemo med. The next CT scan brought worse news. There were new nodules in both lungs. The cancer was now believed to actually be the more aggressive and extremely rare Transitional Liver Cell Tumor. Surgery alone was not going to be the curative answer. He immediately started a drug called Gemox in hopes to "contain" and stave off the inevitable. After much debate, it was agreed between us, his oncologist and the surgeons to remove those tumors. Two days after Christmas 2012 we sped across the heartland, trying to outrun a snowstorm and a low-grade fever he was fighting, to get to Cincinnati. The pathology of these tumors confirmed the new diagnosis. We tracked down Dr. Arthur Zimmerman, MD, Institute of Pathology of the University, Berne, Switzerland, who is an authority on pediatric liver tumors and one of the only researchers to investigate TLCT. After reviewing Dashiell's case history/pathology slides, he confirmed it was this kind of cancer. Post-surgery Dashiell underwent 10 rounds of radiation in Cincinnati. As with all of his other treatments, Dashiell did not suffer any concerning side-effects. In fact, he never endured the expected routine side-effects, such as mouth sores, nausea or fatigue, except for hair loss. Even his recovery from the all of the surgeries was without incident. This was one indicator to us, his family, that nothing was working. Returning to Iowa, we prepared for our Make A Wish trip to Southern California to spend quality time with family and friends there. Subsequent scans after the trip revealed more and bigger tumors in Dashiell's lungs. He did one final round of experimental chemo to no avail. Despite all our efforts, he succumbed to this disease on 6/17/13. To ensure Dashiell's journey was not in vain, his post-mortem tumors were donated to scientific research through University of Iowa Hospital's and Clinics, Cincinnati Children's Hospital and the COG. Additionally his legacy will live on through a trust established by our family, through which we will fund research/projects/programs/organizations that have become important to us as we faced this challenge. We choose to live with as much happiness, fun, peace and love as possible. Dashiell had a blessed life, as happy as any child could possibly be. He never knew one day of true sorrow. He never knew neglect or abuse of any kind. His life (and death) was better than anyone we know. He believes in Santa Claus, loves lemon drop candy, playing with his brothers and hugging his doggie. He is very deeply loved and the remainder of his days were totally and completely full to the brim with all of this.