Living with 'Courage'

His name is Rayden William Courage Darby.

He was born on July 11, 2018 in Spokane, which makes him not yet 3 years old.

He has already lived longer than expected.

“He just wants to play and have fun and cuddle,” said Heather Darby, his mom. “We encourage him to join life.”

But to do so, to venture outside with his family, to play at the park, to pet a dog, to visit the grocery store, puts his life at risk.

“Our family has spent 30 long months in isolation so far, fighting to keep Rayden healthy and safe,” his mom said.

Rayden was born with what is known as Complete DiGeorge Anomaly (cDGA).

“Three words that have completely changed our lives, and will continue to do so forever,” Heather Darby said.

CDGA is a rare disease affecting about 1 in 300,000 babies. Babies born with it are without a thymus gland, which means they have no immune system.

Doctors quickly recognized something was wrong with Rayden after his birth.

“We were preparing to go home within the next day or two when Rayden's newborn screening results came back abnormal and we were told that further testing needed to be done before he could go home. After long days of waiting for results we found out that Rayden's body is not making any T cells,” Heather wrote in an email to The Press.

T cells are the body's main immune system cells. They are made in the bone marrow, sent to the thymus gland and then sent out to fight off viruses, germs, bacteria and infections.

Rayden was sent to Seattle Children's Hospital. After nearly a month of tests, pokes, blood draws, genetic tests, IVs, procedures and being treated for meningitis and sepsis, Rayden finally got a diagnosis: Complete DiGeorge Anomaly.

Heather Darby said cDGA is usually fatal within the first 24 months of life “if the babies born with this are left untreated or their treatment to reconstruct their immune system is unsuccessful.”

So Rayden lives in a sterile environment at a Coeur d’Alene apartment with his parents and two sisters, KaiLee and Shailyn. Masks and gowns are routine in this household, long before COVID-19 came along.

They rarely venture out for fear of contracting germs that could kill Rayden. Because of their son’s fragile state and medical needs, his parents can’t work and the family survives on about $1,000 a month.

“We have given up most of the things we have worked our whole lives to get in order to be with Rayden,” Heather wrote.

"Every single day there is a chance Rayden could get sick," she wrote. "Or get another infection, possibly one that antibiotics might not be able to stop, Or viruses or the flu which turn deadly fast for immunodeficient kiddos."

There are good days.

Last summer, for the first time, Ryan experienced a pool. Prior to the trip, the family took incredible precautions.

It was worth it.

“He clearly had a blast,” Heather Darby said.

Despite all he has endured in his short time on Earth, much of it spent in hospitals and doctor’s offices for exams, treatments and blood draws and shots, Rayden is happy and strong willed. He likes to wrestle. True to his name, he is courageous.

“You don’t bend this child’s will,” his mom said proudly. “If he wants something, he’s going to do everything he can to get it.”

His family treasures each moment with him because they don’t know how many of those moments they’ll have.

"We’re not guaranteed any amount of time with him,” Heather Darby said.

Recently, though, they got better news: He was approved for a thymus transplant at Duke University in Durham, N.C.

“Thirty months this amazing, sweet boy has been waiting for just a chance at life. Insurance approval was one of the most long-awaited parts of all of this,” Heather Darby said.

But it's not clear when the transplant operation will take place.

“We’re stuck in limbo and waiting,” Rayden’s mom said. “It could be next week, could be a year from now, could not happen at all.”

That’s where AeroAngel comes in.

The nonprofit flies children to life-saving medical care when other means of travel are not possible. Because Rayden will have only a few days to get to Duke once he gets the green light, AeroAngel will have to charter a jet for his transportation, which is around $25,000. 

An account on GoFundMe has generated nearly $4,000.

His parents are praying Rayden’s transplant is soon.

“He is truly one of the strongest people I've ever met. He goes through a lot of not great stuff just to stay alive to wait for a chance to fight through a transplant that isn’t anywhere near guaranteed to work,” his mom wrote. “I wish the world could see how he does it with grace and a smile on his adorable chubby face. Maybe that could inspire people to be a little kinder to each other; or to help them realize that everyone is fighting battles and you can't always see them.”

To help the Darbys: www.gofundme.com/RaydenCourage or amzn.to/2MUObhc or any branch of Wells Fargo Bank under the name Baby Rayden D.

“Please find it in your hearts to help us if you can,” Heather wrote.