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Patient Stories

“Madison has a history with cancer,” says her mother, Erin. She’s received a diagnosis that no family should have to face not just once, but twice. At the age of 2, Madison was diagnosed with bilateral retinoblastoma, a type of eye cancer that affects the retina, the inner layer of the eye. A subtle “glow” in her eye caught her parents’ attention, leading them to see an ophthalmologist at Nemours Children’s Hospital, Delaware. The journey that followed included six months of chemotherapy and the removal of her left eye. During this time, Madison and her family worked closely with oncologist, Dr. Gregory Griffin. Dr. Griffin played a big part in her journey and their family had a great experience with him. Madison also had amazing doctors from Wills Eye Hospital in Philly. Dr Carol Shields and Dr. Sara Lally were integral in her treatment.   Years later, at the age of 12, Madison faced […]

Born at 27-weeks, weighing 1 pound and 15 ounces, Marjorie spent her first two and half months of life in the NICU. Following discharge, she was seen at Nemours Children’s Health, Jacksonville for hip dysplasia and eye checkups. When she was 7 months old, Marjorie’s parents noticed her belly was very distended. It continued to swell quickly, so her parents brought her to the pediatrician. After an ultrasound confirmed a mass, the family was rushed via ambulance to Wolfson Children’s Hospital where she first met Dr. Gauger. “Following multiple scans and tests, we heard the words you never want to hear, ‘Your child has cancer,’” says Marjorie’s mom, McCall. “Marjorie was diagnosed with neuroblastoma 4S. She spent three weeks in the hospital and was readmitted for more chemotherapy before being discharged on July 11, 2015.” After discharging, Marjorie continued to be followed by her oncology team at Nemours Children’s. “Through […]

The day before we were admitted to Nemours Children’s Hospital, Florida, my daughter, Aurelia, had had a bit of a cough, a fever, and was vomiting. I took her to two different urgent cares, and they both told us it was just a virus, and she was fine. That night I slept in the bed with her because I was concerned about her fever.  In the middle of the night, she started having trouble breathing and her lips turned blue. We took her to the emergency room and she was transferred to Nemours Children’s. There, she was diagnosed with septic shock, pneumonia, and heart failure due to strep and human metapneumovirus. She was put on a ventilator but she still wasn’t getting enough oxygen, so she was put on ECMO to see if that would give her heart and lungs time to heal. An ECMO machine is similar to a heart-lung by-pass machine used in […]

Like many expectant parents, Arlo’s parents couldn’t wait to find out the sex of their baby. When Carlie was 12 weeks pregnant, they opted to get NIPT bloodwork done to find out as soon as possible. When their blood screening came back, Arlo’s parents were surprised to find out that their baby boy had a 98% chance of having Down Syndrome. “Of course, we were shocked,” says Carlie, “But knowing about our baby’s condition only helped solidify the fact that he was so wanted and so loved—extra chromosome and all.” “From the moment we got the phone call with our diagnosis, through the rest of my pregnancy and now, we have been beyond blessed with amazing doctors, nurses, and therapists,” says Carlie. “The Down Syndrome Clinic at Nemours has been a beautiful addition to Arlo’s village. We feel like they are truly there for us, not as just another patient, […]

In 2020 and again in 2021, Sammy had two serious falls, both caused by fainting. Each time, Sammy was told she just had a concussion. However, the second time, her symptoms never went away. “I had a horrible headache that never left, the light continued to bother me and I wasn’t able to focus on stuff the way I normally did,” says Sammy. “I felt very limited during this time. I played volleyball and it would affect my ability to play. Being outside under the sun would cause me to get lightheaded and feel pain. I couldn’t touch my head much and I rarely pulled my hair up, unless it was for a game. It was even hard to sleep at night because of all the pressure I felt.” While in an appointment with Dr. Leto Barone for a different condition, he asked Sammy about her concussion. As she explained […]

When Aila was just 2 years old, her parents started to notice that something was off. Each time Aila tried to walk, she was always holding onto something. She seemed to struggle when she wasn’t gripping her toy stroller. After going to see a local physical therapist, Aila’s family found out that she had SMA. SMA, or spinal muscular atrophy, is a genetic disorder that can affect your muscles, nerve cells, and spinal cord. People with SMA may experience a decline in strength and limited mobility. As Aila grew older, she had to use a wheelchair. She discovered that she could not complete tasks, like basic hygiene actions, on her own and frequently needed assistance. When she was about 7 years old, Aila began seeing doctors at Nemours Children’s Hospital, Florida. Her family was making 6-hour drives for Aila to be treated at Nemours Children’s. After countless hours of research […]