Evan and Leah Page have some of the sweetest smiles you’ll ever see. The siblings, now 6 and 7 years old, have faced a lot but they’re in it together.

A sore throat led to a diagnosis of Gaucher disease and life-saving treatment at CHoR

Shortly after Evan and Leah moved in with their great aunt and guardian, Sherrell Cordell, in the summer of 2021 Leah woke up one morning with a sore throat.

“I didn’t know if it could be COVID or strep throat. Something told me to take her to the ER. I’m glad I did,” said Sherrell.

The doctors at that ER sent Leah to CHoR immediately. Her organs were failing, and her spleen had ballooned to 10 pounds. A normal, adult spleen weighs about six ounces. She needed emergency surgery to remove the spleen – and save her life.

Both Evan and Leah had distended stomachs and hadn’t received much in way of health care when they came to Sherrell – whom they call Auntie – at only 3 and 4 years old. After Leah’s scare and surgery, testing showed that the brother and sister both had Gaucher disease, a rare genetic condition that leads to a missing enzyme the body needs to function properly.

“Without this enzyme, fatty deposits build up in the liver and spleen and cause medical complications. Due to advances in science, Evan and Leah are able to get enzyme replacement through an IV that helps prevent these build ups from occurring and keeps their bodies strong,” said Dr. Tiffany Kimbrough, the siblings’ pediatrician.

The comprehensive, collaborative pediatric care team for Evan and Leah at CHoR

Dr. Kimbrough is one of the many people at CHoR who help keep Evan and Leah on their healthy path. Our genetics team also follows them closely to ensure they have regular screening labs and imaging, receive their enzyme replacement therapy and don’t experience complications.

“Evan and Leah are very smart, cheerful and always full of energy whenever I see them in clinic. They make every visit unique with their cheerful attitude and interesting questions,” said Dr. Hind Al Saif, their genetic specialist.

They also follow up with our teams in endocrinology, surgery, gastroenterology and ophthalmology.

“My role is to monitor their liver, nutritional state and growth due to their chronic condition. This is done by obtaining labs and measurements and having them seen by a pediatric nutritionist every 4 to 6 months,” said Debbie Boatwright, gastroenterology nurse practitioner. “Leah was so sick when I met her but was so sweet and looked after her brother…I immediately felt much love and empathy for them as they were so appreciative of care and kindness. They are sweet, smart and beautiful.”

The siblings also have plenty of fans in our Children’s Pavilion infusion clinic, where they come for their enzyme therapy every two weeks. The process takes several hours. Afterward, they go right to school. Evan is in first grade and Leah’s in second. When they’re not in clinic, at school or playing with their friends at daycare, Auntie makes sure they have plenty of fun at the park, swimming, going to King’s Dominion or eating at their favorite spots – McDonald’s and Sweet Frog.

Happiness, health and an upcoming milestone

“Their aunt is a tremendous caregiver – not only ensuring that they are seeing all of their specialists and getting medical care, but also that they’re thriving in school and living a normal childhood,” said Dr. Kimbrough. “She deserves all the praise for keeping these little heroes going strong!”

Our team is grateful for the unconditional love, care and comfort Sherrell provides to Evan and Leah. Our families – whether parents, aunts, grandparents or guardians – play an incredible role in the care of our patients. Sherrell appreciates the “wonderful” care her family’s CHoR team has provided to keep her great niece and nephew healthy too.

“They’re the top hospital as far as I’m concerned. They saved Leah,” she said. “I know Evan and Leah can’t do all the things other kids do, like sports, because of the safety risks related to their disease. I just hope they have a good life. They love school, so I hope they go to college, grow up, get married, have kids,” added Sherrell.

As everyone looks toward a happier, healthier future for Evan and Leah, Sherrell plans to officially adopt them and two of their siblings in the coming months.

“My hopes for them are that one day there will be a cure for them, so they do not have to get infusions every one to two weeks. I hope they will always feel secure and be happy,” said Debbie, which the rest of their CHoR team would echo wholeheartedly.

Meet the other CHoR Calendar Kids on our blog.