Riley Children's Health

03/01/2026

Seven-year-old Chandler Hammond was diagnosed with what his doctor called an exceptionally rare genetic disorder named Hao-Fountain syndrome.

His mom, Courtneay Dellavalle-Jones, said she noticed significant delays in her son's ability to walk and talk, and pushed for genetic testing. That testing confirmed the Hao-Fountain syndrome.

"The gene for Hao Fountain syndrome is this gene, USP7, and that gene is so sensitive one letter out of thousands can change the function enough, and really steer a child's developing brain into autism and difficult behaviors in a way that, even though everything else is optimized, that's all it takes," Dr. Theodore Wilson, medical geneticist, said.

Chandler is the only patient in Indiana with this diagnosis, and one of very few people with Hao-Fountain syndrome around the world.

Seven-year-old Chandler Hammond was diagnosed with what his doctor called an exceptionally rare genetic disorder named Hao-Fountain syndrome. His mom,…

02/27/2026

Three-year-old Mitchell Horstman showed his biggest smile when he was able to see his older sister last weekend. They are only two years apart in age so they’re pretty close to each other. They hadn’t been able to see each other since Mitchell was flown to Riley Hospital for Children on Wed., Feb. 18th from a hospital near his home. The left side of Mitchell’s heart hadn’t been working properly which caused a buildup of fluids throughout his body, and caused him to have significantly less energy and shortness of breath. His Riley care team drained his excess fluids and is treating him with medication to stabilize his heart. On Monday he was feeling much better and enjoyed time playing in his toy box with his parents, Jesse and Erika Horstman. Like most kids his age he likes dinosaurs, trucks and playing with kid-sized construction equipment. He will begin to be weaned off his current medication and switch to oral medication. That switch will allow him to go home soon to see his sister and will probably result in his new biggest smile.

02/27/2026

Five-year-old’s complex chromosomal condition can’t dim her light.

Five-year-old’s complex chromosomal condition can’t dim her light.

02/26/2026

The joy and happiness the Riley CVICU team feels for 9-year-old Amelia “Millie” Modesitt who received her new heart on February 13 culminated in a celebratory send-off this week. After five months in the hospital, Millie got to depart 3West. All the best in your next chapter, Millie!

02/26/2026

Cochlear implants will give deaf toddlers a chance to catch up with the hearing world.

Cochlear implants will give deaf toddlers a chance to catch up with the hearing world.

02/25/2026

Care and compassion abound within Riley Children's Health's pediatric dialysis clinic. Patients Reda Hassan (tan shoes) and Ali Bahar (blue pants) giggled and grinned as nurses Suzie Hedrick and Chelsea Giuffre sang songs and comforted them during their treatments for chronic kidney disease on Tuesday. Team members also caught up with one of their favorite college students, Grace LaSell, who comes to the clinic for treatment for anca vasculitis.

It takes merely a few moments to realize the bonds formed between patients and team members is a silver lining on our patients' medical journeys.

02/25/2026

Brooklyn Willis was just 8 years old when her brother was born with hypoplastic left heart syndrome. The long-winded diagnosis meant little to her as a child, but the visits to Riley Hospital for Children stayed with her.
Willis, now a young adult, decided then that she wanted to be a nurse. Today, she works on the CVICU at Riley, the unit where the most critically ill heart patients are treated.
“When I interviewed on the CVICU, I knew I had to have this job,” she said.
A year later, she hasn’t changed her mind. The nurse recently had a full-circle moment of sorts when she reunited with the mom of a tiny patient in the Heart Center.
Katie Navel’s daughter, Maggie, has been in the CVICU since she was born five months ago with serious heart defects. Turns out, Navel and Willis went to the same school as kids and lived just blocks from one another in the Terre Haute area.
Navel occasionally babysat the younger Willis and another brother while Willis’ mom made trips to Riley.
The two recently had a photo taken together with Maggie so they could share it with their elementary school teachers and principal just to illustrate how they have reconnected.
“It is so special to take care of Maggie now because of my connection with Katie,” said Willis, who added that her baby brother, now 13, is doing well since his last surgery with Dr. Mark Turrentine.
Maggie’s mom agrees: “I think her connection to Riley makes her an even better nurse.”
Being on the other side of care is definitely an advantage, Willis said, adding, “It’s nice to care for these families today.”

--Maureen Gilmer, mgilmer1@iuhealth.org

02/24/2026

After five months of waiting at Riley Hospital for Children, Amelia “Millie” Modesitt received her hero heart Feb. 13, the day before Valentine’s Day. The 9-year-old daughter of Mitch and Candra Modesitt spent a week recovering in the CVICU from the transplant surgery, performed by Dr. Jeremy Herrmann, before she was moved to the stepdown unit to continue getting stronger. She is doing so well, her mom said, that she likely will be discharged this week. Millie, who delights her care team with doctor jokes and her sassy spirit, has already been walking the halls, eager to get back to being a regular kid again.
Learn more about Millie’s journey here: https://tinyurl.com/ykdanc9j

02/23/2026

Purdue student and cancer survivor Vivian Eagle is letting go of grief and finding her joy in volleyball.

02/21/2026

Eighth-grader Dom Bowman, 14, was experiencing back pain and a burning sensation in his legs last month. He was taken to IU Health North hospital where he was examined and treated, then was transferred to Riley Hospital for Children. Doctors determined that he had experienced a stroke within his spinal cord and that there was a chance Dom would not walk again. Within the first week of hospitalization Dom started regaining feeling in his legs and was able to stand up. After about two weeks he started taking steps. Now, after three weeks of treatment, physical therapy and occupational therapy Dom can walk unassisted. Friday afternoon Dom was working with PT Taylor Allison with some help from his dad, Tim Bowman. Dom’s mother is Julie Bowman. Using a weight assistance device on rails for safety Dom maneuvered over an obstacle course designed to improve his balance, stability, coordination and leg strength. He also worked on dribbling a ball while walking within the rehabilitation area. Tim Bowman said that Dom is shocking people with the progress he has made, and that he is looking forward to playing baseball gain. Dom’s baseball skills allow him to play four positions: pitcher, catcher and first and third baseman.

02/20/2026

Sickle Cell Disease (SCD) is the most common inherited blood disorder in the United States. One of the most severe complications a patient can suffer from is a stroke.

At Riley Children's Health, more than 75% of patients with SCD receive annual screenings for stroke which leads to early detection of this complication. Riley patients with SCD are able to receive transcranial doppler screenings from Dr. Christopher Jackman, pediatric neurologist, during their routine appointments in the sickle cell clinic, removing barriers such as transportation, lack of knowledge of this testing, and avoidance due to extra time needed to schedule and attend an additional appointment.

Sickle Cell Disease (SCD) is the most common inherited blood disorder in the United States. One of the most severe complications a patient can suffer from…

02/20/2026

Kirsten Reyes receives a DAISY for her work with patients and families in the Riley Allergy and Immunology Clinic.