Immediately after giving birth, we learned that our baby, Boden, had an extremely rare genetic disorder called Diamond Blackfan Anemia (DBA). DBA is a disorder that prevents the production of red blood cells. To survive, Boden needs a blood transfusion every three weeks. At 22 months of life, Boden had received 32 blood transfusions.

“No parent ever wishes for their child to become a hematology patient. But since Boden had no choice in the hand he was dealt, here we are. We are so grateful for the incredible team at Nemours who continue to care for him as if he were their own. They help us navigate through these unfamiliar and challenging times,” said Boden’s mother.

Throughout this process, Boden remains happy and smiling. He demonstrates strength and resilience through numerous tests, appointments and the countless needles he’s endured. He can often be found with toy cars in hand, chasing after his big brother and sister.

“Boden is such a bright light in our lives. We are so lucky that he is ours. Diamond Blackfan Anemia is tough, but thankfully, so is our Boden,” said his mother.

My feisty, 9-year-old daughter, Demira, was sick last year. Prior to her diagnosis, she had  symptoms such as vomiting, dizziness and headaches. After numerous trips to different pediatricians, the family still had no answers. I saw my little girl drifting away from me and it felt like there was nothing I could do.

Finally, a pediatrician referred Demira to Nemours for an MRI. On July 25, 2020 she had her test and the kind and compassionate MRI technician provided Demira and our family comfort during our time of uncertainty. The doctor delivered the terrible news to our family: the MRI had shown a medulloblastoma – a brain tumor.

In the middle of receiving the devastating information, Demira looked up at me, hugged me and said, “Mom, everything is going to be ok.”

She was immediately admitted into Nemours Specialty Care to begin her battle with cancer. Dr. Piatt, a neurosurgeon at Nemours, removed the cancerous tumor. Dr. Piatt took Demira to meet with the rest of her oncology team, Dr. Walter and Dr. White, or as we call them “men in shining armor” because of the impact they made on our family.

The nurses, therapists and doctors like Dr. Eileen Shieh, make sure we understand everything and we are doing ok. Without their love and compassion, we don’t know what we would do.

A year later, Demira is in remission and has two more rounds of chemotherapy to go. Her strength and bravery inspire me as she continues her battle day-by-day.

My son, Kareem, now 18, was diagnosed with sickle cell disease shortly after birth. Battling sickle cell disease has not been easy. He often experiences pain episodes, resulting in frequent trips to Nemours/Alfred I duPont Hospital for Children to receive medication and fluids through an IV to get him through the pain.

Unfortunately, sickle cell disease is not widely understood. For instance, simple fluctuations in the weather can trigger severe pain. Kareem would need a doctor’s note for basic necessities such as carrying a water bottle or being excused from gym class at school. In sixth grade, we received the news that he had been accepted into a school that wouldn’t penalize him for falling behind in his classes because his illness was causing him to miss school. As Kareem has grown up, his Nemours doctors have taught him how to manage the pain through exercises, staying warm, hydrating and listening to his body.

Kareem likes to help me out around the house, work on cars, help our neighbors with yard work and play with our dogs – Emee and Max. He plans to study engineering at Delaware Technical Community College this fall.

I am very proud of how much he has accomplished so far in life and am looking forward to his future as a young man.

Cole Willey has always been athletic. He had been wrestling and playing football on the state level for several years, even before the young age of 14. Unfortunately, as Cole entered 8^th grade, he started to experience extreme discomfort in his back and hips. After three long weeks of numerous emergency room visits and doctor appointments, an ER doctor immediately shipped Cole to Nemours Children’s Hospital in Delaware.

On March 14^th, 2019, Cole was diagnosed with High-Risk Pre-B Cell Acute Lymphoblastic Leukemia. It has been a long two years during which Cole has endured many admissions, blood transfusions, chemotherapy infusions and lumbar punctures. Yet he continued to show his strength, determination and positivity. Although Cole was in treatment, he never stopped doing what he loves. He played Varsity football this year and was also the Captain for his Varsity Wrestling team. Meanwhile, Cole also received 4.0 academic honors along with a nomination to be in the National Honor Society.

It is amazing how much has changed in just a few short months. With all the research and clinical studies, Cole took his last round of chemo meds 7/3/2021, a year earlier than ever expected! He has since been chemo-free for 6 weeks and is doing fantastically. He continues to go to Nemours for monthly bloodwork and to see the amazing doctors on his team.

“This journey has been challenging, emotional and exhausting, but from day one we said, Cole has Leukemia, Leukemia does not have Cole. We live every day to the fullest, and never ever stop praying for him to be considered ‘cured’. We are beyond grateful to have had such an amazing Hematology and Oncology team caring for our boy since March of 2019.” ~ Cole’s parents