Turning Fear into Strength: Remington's Journey with Chronic Illness

Born with a congenital heart defect called bicuspid aortic valve with stenosis, Remington’s life came with routines most kids never think about, like twice-daily medications, and visits to the doctor every six months. On the outside, he looked like any other boy, but his heart had a different story to tell. Behind every routine check-up, his parents carried the quiet weight of what lay ahead. 

“For us, it has been scary and nerve-wracking knowing he would have to be operated on to live a normal, healthy life,” his mom shared. 

When the time came, Remi and his mom traveled more than seven hours from their home to Seattle Children’s Hospital. He underwent specialized heart surgery – the Ross procedure with a donor homograft pulmonary valve – and was separated from the rest of his family for two long weeks.  

“It was difficult having our family apart... Remi and I couldn’t wait to get home.” 

The surgery was a success, but recovery brought its own challenges: sternum precautions, medication schedules, and a new way of moving through the world.  

“There’s a strange sense of peace knowing this is all over – for hopefully ten years.” 

Hospitals can be cold and intimidating places, especially for children. But sometimes, it’s the smallest gesture that brings happiness. For Remi, it was a superhero-themed Starlight Hospital Gown. 

“He felt like a superhero in his gown! I even caught him smiling when people told him how cool he looked.” 

For his family, every smile was a reminder that brighter days were coming.

“I felt proud of him and his little sparks of enthusiasm and energy during such a difficult time.”

Remi's stay at Seattle Children’s was filled with support, kindness, and compassionate care. Nurses took time to show his mom how to care for his healing scar and how to safely move him during recovery. 

“We had several nurses who were incredibly important to our healing journey and an incredible surgeon, Dr. Mauchley, who helped me feel more comfortable with all my son had to endure.” 

But there was a connection he made with a small, fuzzy hero – a stuffed squirrel, gifted to Remi by the hospital’s Child Life Specialist – that changed his hospital experience. At first, Remi wasn’t interested in playing but by day four, everything changed. 

“Remi asked to see his scar, so I took a picture of him. He was surprised at first but then looked sad. I reminded him of the matching scar his squirrel had.” 

That simple connection helped Remi begin to accept what he had been through. Where words failed, play helped.

“Once he started to accept [his scar], he would show it off and smile instead of looking sad at it. That little stuffed squirrel is the reason Remi left the hospital accepting his scar and feeling proud of it.” 

Remi’s family was amazed at how quickly he began to bounce back just days after surgery. The photos they captured in those moments showed hope and the life-changing impact of care designed just for kids.  

Remi’s story is a powerful reminder of how much love, creativity, and support matter – especially during a child’s most vulnerable moments. From superhero-themed Starlight Hospital Gowns to matching stuffed animals, it’s the little things that can turn fear into courage and sadness into happiness. 

Though Remi’s journey isn’t over yet, he takes on each day with a bright smile and his squirrel friend by his side. 

For kids like Remi, a hospital stay can feel overwhelming, but Starlight programs turn fear into moments of happiness. A donation will help provide gowns, toys, and play that make a lasting difference for hospitalized children and their families. Because healing beings with happiness™.