Here are a few highlights of the incredible patients and their families who are impacted by donations to the Help Our Kids Radiothon!
Six-year-old Ariana recently began cyber school, and she loves it. Her mother, Maria, was not sure she’d ever reach this milestone. Maria was sick when she gave birth and couldn’t see her daughter for four days. When she did, Maria found Ariana severely jaundiced. Ariana was in the NICU for testing and care that lasted nearly a month.
Ariana was soon diagnosed with juvenile nephronophthisis. Her kidneys were not working, and she needed dialysis. Her care team placed a central line in Ariana to facilitate lab work, shaved her head to place IVs, performed a bone marrow biopsy, and put a peritoneal dialysis port in her belly for home dialysis. That day, Ariana went into cardiac arrest. She was two months old. “I thought I was going to lose my child,” said Maria. Ariana was on a ventilator for two weeks and in the PICU for nearly two months.
For the next two years, Ariana received her care at the same hospital. Then, Maria noticed that Ariana developed a heavy cough in the middle of the night.
“I put my hand on her back, and she threw up large blood clots,” Maria said. “Our local pediatric hospital didn’t have a liver specialist, so they sent me to a second children’s hospital for testing. There I was informed that Ariana needed a new kidney and would require a liver transplant when she was older. But something didn’t feel right to me. My gut told me I needed to take her somewhere else.”
By then, Ariana was 3 years old, still on dialysis, and had developed an intense itch. So her doctor started Ariana on a new medication to combat high phosphate levels. Just a few afternoons after taking the prescription, Ariana asked her mother why she had turned the lights off. She told Maria that she could not see. They returned to their hospital, where an eye specialist examined Ariana and informed Maria that her daughter had gone blind due to kidney disease.
“I was devastated and still didn’t have a clear answer as to why my daughter was throwing up blood,” said Maria. “One of Ariana’s nurses — an angel, really — took me aside and told me to do my research but to take her to Nemours Children’s.
“Dr. Dunn touched Ariana’s belly and said, ‘Oh, yes — Ariana needs a liver transplant.’ He left the room and returned with kidney and liver transplant papers for my husband and me to review. I burst into tears and hugged my daughter while my husband signed the papers.”
After her transplant, Ariana’s skin color normalized, her eyes were no longer neon yellow, and her itching ceased. Maria calls it a complete U-turn.
“Now she eats everything, loves to ride her bike, play dress up and LEGOs, jumps on the trampoline — these are all activities she couldn’t do before the transplant,” said Maria. “Ariana loves to socialize with people and asks them questions about everything. She is a brand-new child! We can’t thank Dr. Dunn and the transplant team enough.”
Born in a permanent kneeling position, Noah was diagnosed with Escobar syndrome and arthrogryposis, the condition responsible for his diminutive frame, curved joints and significant scoliosis.
Noah spent the first 1,275 days of his life in the foster care system until he crossed paths with Dave and Michaela, volunteers at the local pediatric hospital who were interested in adoption. They became a family with a mission. Determined to walk, Noah, 4, asked his new parents to find doctors who would help him. A group on Facebook recommended Nemours Children’s Hospital.
Noah became a patient in Reid Nichols, MD's orthopedic clinic at Nemours Children's and underwent a casting and reconstructive surgery process that lasted three months.
When Noah’s casts were finally removed, he went to physical therapy and walked on the first day. Now 7, he takes dance lessons. In addition, Noah loves his dog, Lucky, going to school, Christmas time and YouTube kids.
“Thank you, Dr. Nichols for helping me walk,” said Noah. “I can’t wait to dance in my first recital this year!”
“Dave and I are so appreciative to Dr. Nichols and the Nemours team for helping Noah realize his big dream of not only walking, but dancing too,” Michaela said. “We are blown away by what he has been able to accomplish in a year’s time — his whole world has opened up in the best of ways thanks to the chance he was given by Reid.”
Please help us give every child like Noah a fighting chance. Donate today!
Born in 2016, Sha’Nia was rushed to Nemours Children’s Hospital immediately after birth for open-heart surgery because of a severe congenital heart defect. Nemours surgeons diagnosed Sha’Nia with Infradiaphragmatic Total Anomalous Pulmonary Venous Return.
Sha’Nia was able to go home after multiple surgeries, but was soon rushed back to Nemours when she went into atrial flutter, a condition that happens if the heart’s upper chambers beat out of coordination with the lower chambers, causing poor blood flow. Donate today!
Jessica was like any other happy toddler. She was giggly and playful and appeared totally healthy. When Jessica’s parents noticed a growth on her back, the last thing they expected was to hear that their 14-month-old little girl had cancer.
“As you can understand, our whole world was rocked. Living life when your child is fighting cancer is hardly living,” says Jessica’s mother, Kate. Jessica needed surgery to remove her tumor. Before and after surgery she received chemotherapy. With a schedule that required six days of chemotherapy followed by 21 days to recover, Jessica’s treatment lasted almost a year. When treatment was over, she worked with physical therapists for more than a year to learn how to walk again because of the damage the tumor had caused. Her family calls her “Little Fierce” because she fought so hard to beat cancer.
When Delaney was born, she seemed completely healthy. But within a few months, her family noticed the way she moved her legs seemed unusual. Delaney’s pediatrician took x-rays and ultrasounds of her hips to see if there was a problem, but everything looked normal. By the time she was a little over a year, she was walking and running, and everything seemed fine.
Then, when Delaney was about 18 months old, her family noticed a change: she was limping. But it was minor, she wasn’t in pain, and all her tests looked normal. However, things started getting worse and her family felt more and more helpless. One morning, Delaney woke up screaming. She refused to stand, and her knee was bright red, swollen and warm. Her pediatrician said Delaney should be taken immediately to Nemours. At Nemours, Delaney was diagnosed with Juvenile Idiopathic Arthritis (JIA).
Mateo was a normal 12-year-old healthy and happy boy. One day after a karate class, he complained about chest pain and was rushed to the ER at Nemours/Alfred I. duPont Hospital for Children. The next day it was confirmed that Mateo had Leukemia. He started chemotherapy treatment that same day, after further evaluation, Mateo was officially diagnosed with Acute Lymphoblastic Leukemia - High Risk T- Cell. Mateo went through very aggressive chemotherapy treatments, blood transfusions and platelets transfusions for the first 9 months. Today, Mateo is in remission and currently undergoing chemotherapy treatment until January, 2021. Despite missing all of his 7th grade school year, Mateo is currently attending 8th grade and will graduate with his classmates he was with since first grade! Mateo's love for music and playing the guitar stemmed from his experience with Child Life and the Music Therapy program. He can play some incredible classic rock tunes with ease! Mateo was recently accepted to go to Salesianum High School this fall and cannot wait to attend. Watch Mateo's story.
Meet Ronan, who served as the Patient Ambassador at the 2018 Help Our Kids Radiothon. Ronan suffered a traumatic brain injury during the summer of 2016 when he was hit in the head with a bocce ball while on the beach with his family. After nearly losing his life several times due to cardiac arrest and a brain aneurysm, Ronan was put on ECMO life-support by the doctors at Nemours/Alfred I. duPont Hospital for Children. After making a miraculous recovery, Ronan underwent extensive physical, occupational and speech therapy to try to regain his motor functions, including the ability to walk. Today, Ronan is attending high school, working on rebuilding his short-term memory and making incredible steps towards recovery! He continues to support children affected by traumatic brain injury through his foundation, Project GreenHeart.
In 2017, the Help Our Kids Radiothon patient ambassador was Parker. Parker wasn’t feeling well in December 2014. Her doctor thought she had a virus, so her parents were treating the symptoms, giving her Tylenol and Motrin. On December 20th, 2014 doctors discovered that Parker’s right lung had partially collapsed. She had MRSA pneumonia in both lungs, as well as the rhinovirus. Nemours doctors immediately operated drained fluid from her lungs and inserted a chest tube. The second day, her left lung collapsed. She had the same surgery on that side. “It’s like a guardian angel was watching over us. I could not believe how wonderful everyone was. They saved her life,” her mom, Leigh, said. Ultimately, Parker was in the hospital for three weeks. Today, Parker is doing very well and perfectly healthy. Her parents are so grateful for the care she received.
Isaiah was diagnosed with Osteogenesis imperfecta (OI) or “brittle bone disease” when he was still in utero. His legs were bowed, his arms were short, and he had multiple bone fractures. Even when another hospital recommended she terminate the pregnancy, Isaiah’s mother, Vicky, refused to believe her baby was going to die. She had Isaiah transferred to Nemours/Alfred I. duPont Hospital for Children three days after he was born. At the time, Isaiah’s bones were so fragile that Vicky had to carry him around on a special pillow. Nemours gave him treatment to strengthen his bones, a gradual, but successful process, and he received physical therapy. Although he faces some unique challenges, you wouldn’t know that by looking at his smile, which is often the brightest in the room. Isaiah shined as he held the title as Patient Ambassador for the 2016 Radiothon.
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