A local boy has been fighting for life since his birth. Recently he and his family were given a chance to pursue an opportunity to find a new normal.
Rayden William Courage Darby is a three year old boy who was born to Heather and Frank Darby of Tensed. He is the youngest of three and has two sisters, Shailyn, 6, and Kai, 14.
Since Rayden’s birth, it has been anything but normal for the Darby family. Rayden was born with an autoimmune disease called Congenital Athymia, that resulted in him being born without a thymus gland among other complications.
Rayden was sent to Seattle’s Children’s hospital only 13 days after he was born and he and his family became temporary residents in Seattle. Due to the nature of Rayden’s illness, he cannot be exposed to much, as his autoimmune disease makes it difficult for him to fight off viruses and bacteria.
This made it where the Darby family could not leave Rayden’s side or they would have to quarantine. Rayden’s father, Frank, was not able to return to work or the couple’s home in Tensed and the couple’s two girls could not return school.
The couple had to start a Gofundme campaign to make ends meet as they were stuck in Seattle. The Darby’s were able to raise close to $10,000 and Heather said that money was spent just trying to survive while Rayden was getting treatment and waiting to hear about a thymus donor.
Heather said there are only two places in the world that are practicing thymus transplants. There is one institute in London and one at Duke University in North Carolina.
After years of being stranded while waiting for any word on a transplant, the family finally saw a possible light at the end of the tunnel as Duke University invited the family to bring Rayden for a procedure when a thymus was available.
“There were a lot of tears and disbelief,” Heather said. “We were shocked. For the first time in his life, we get to be excited about something.”
“This is Rayden’s chance to live a normal life. It’s the beginning of his forever,” she added.
Rayden does still have some time to wait, but his mom said she is thankful he has been put on the waiting list. She said that though the family is excited, there are some specific factors that need to line up in order for the family to fly to North Carolina for the possible transplant.
“We don’t have a date confirmed yet,” Heather said. “When they get a donation they have to give it 14 to 21 days while it’s cleaned. It could still turn out to be bad after that.”
Other things have turned around for the family as they have been able to move back closer to home. Heather said the family was technically homeless right as COVID-19 was starting to affect the U.S. Thanks to support from those on Gofundme, the couple were able to find a home.
Right now the Darby’s live in Coeur d’Alene and Heather said Rayden is in good spirits and has been playful with his sisters. Heather said Rayden has been impacted by the situation as he has spent a lot of time around doctors and nurses, to the point they were like family themselves.
Heather said she can see the impact in his play.
“You can already see that Rayden has compassion,” Heather said. “I believe Rayden will be a doctor. He’s taken an interest in his sister’s baby dolls but instead of changing them or pretending to feed them he pulls out the fake thermometer and gives them medicine.”
“It’s second nature to him as he’s been in that environment all of his life,” she continued.
Heather said their life is still anything but normal as the family has to constantly disinfect any packages or items that enter the house. It also has still been difficult for Frank to return to work and the two girls are still out of school.
“It’s been difficult for my daughters since they haven’t been able to go back to school,” Heather said. “For my 14-year-old, it has been hard emotionally. She misses her friends and it was hard for her to leave school.”
“For my six-year-old it’s hard because she wants to be able to make friends,” she added. “But they love their brother very much and Shailyn and Rayden are definitely best friends. They go everywhere together and always play together. Kia always wants to try and teach him silly dance moves.”
Heather said that Frank is eager to someday work on cars and teach Rayden how to use tools.
Until then the Darby family will be on stand-by in isolation until Duke University is ready for them to make the journey to its facilities.
“We are excited, Wwe know we have a little while to wait, but we are blessed that Rayden is on the waiting list,” Heather said.
Those in the community can support the Darby family by donating to their gofundme at gofund.me/e9029d8e. The couple also have an Amazon wishlist for Rayden at https://www.amazon.com/baby-reg/rayden-darby-july-2021-coeurdalene/3MYCJUDTPKCJG .
There is also a group on Facebook under the name Rayden Courage for anyone who wants to keep up-to-date on Rayden’s journey.