Patient Stories

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.”

Meet Reign 

“Your blood is like this,” says 7-year-old Reign Jefferson. She cups her fingers like capital Cs. “My blood is like this,” Reign says. Her fingers clamp down into a sickle shape. This is how Reign explains her medical condition: sickle cell anemia. One of her Nemours Children’s doctors taught her the demonstration. She shares it with children and adults alike. Following her demo, Reign further expounds that she must drink plenty of water to help her blood cells “open up.”

Reign’s mom, Elecia, recalls when her daughter was diagnosed as a baby. “I felt so sad and guilty. I thought it was all my fault,” she says. “I was scared and nervous, and Nemours Children’s has wiped away all of my fears. Without her care team, Reign would not be the energetic, dancing, cart-wheeling girl she is today.”

Elecia has good cause for concern. Sickle cell anemia symptoms can include tiredness, difficulty breathing (also known as chest syndrome), pain and swelling in the hands and feet, cold feet and pale skin. In addition, many patients experience episodes of acute pain, seizures, chronic organ failure and stroke. The average life expectancy for females with sickle cell anemia is 48, while it’s 42 years for males.

“Sickle cell doesn’t stop me from having fun,” says Reign. “At Nemours Children’s I like playing with the train, getting my face painted and eating cafeteria food. I love chips and cake pops. I also really like my doctors and want to be just like them.”

“We have appointments every three months,” says Elecia. “The doctors and nurses come in the exam room, sit down and talk with Reign so she feels comfortable and like she is part of her care. It’s clear they want patients to feel happy and healthy, not sick.”

Meet Ines

“Mom, I love all the different people we meet here.” And she truly does. She talks to everyone, asking the physical therapists and nurses if they got the Wordle today, she laughs at the animated stories the PCTs tell her, she shares with the occupational therapists where she’s at in the Harry Potter series, talks with Peds Academy interns about her favorite novels written in verse, plays Dear Evan Hansen on the keyboard while music therapy sings along, and explodes with laughter with the childlife therapist as they assess the mess they’ve made with syringe painting turned finger painting. Her eight week stay here has been incredibly hard work, post selective dorsal rhizotomy surgery followed by intensive inpatient rehab, but through her eyes it had been pure delight.  

Ines is fourteen years old and has cerebral palsy and uses a wheelchair. She is the first born triplet and one of eight siblings, so she is no stranger to being around people and having a busy schedule. And being here, everyone has truly treated her as part of the Nemours family. Not only did the doctors cheer her on as she made strides post operatively and gained strength, but as she made progress on her complicated round puzzle. E

Everyday Ines greets everyone with her amazing smile. She loves to show everyone her artwork lining the windows. Her paperchains each bear a positive word written on each link about her highlights here. These words include, “view”, “sunsets”,  “movies”, “vegan chicken tenders”, and “garden”. Hardly words that describe a recovery from a T1-S1 spine incision. But Nemours goes above and beyond to heal the whole child, with exceptional medical care combined with the amenities of home. Our journey is far from over, but as she is discharged at the end of this week, we are well equipped and supported to continue her journey. 

Children in the hospital face hard and scary things, but Nemours steps up to ease those fears and provide comfort. As Ines rolls down the hallway, waving to her unit neighbors as they enjoy her light up wheels, the smiles on the kids’ faces stand out the most.