Boy with rare disorder asks supporters to wear yellow before operation

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/ Source: TODAY
By Rheana Murray

A 5-year-old boy confined to a hospital room due to a rare immune disorder is asking people to wear yellow in a show of support before his next operation — and the response on social media has been overwhelming, his family says.

Young Seth Lane made the request in a touching YouTube video, explaining his condition, severe combined immunodeficiency (SCID), through a series of bright yellow cards.

“I’m in hospital. I was born with no immune system,” one of the cards read.

He asked supporters to wear his favorite color on March 27, before he undergoes a second bone marrow operation, and post the photos online with the hashtag #WearYellowForSeth. Seth’s family, from Northamptonshire, England, has been chronicling his time at the hospital on their blog, “Our Little Hero.”

Seth’s condition is often called “bubble boy disease” or “boy in the bubble disease,” inspired by "The Boy in the Plastic Bubble," a 1976 movie starring John Travolta about a man with SCID.

It occurs in approximately 1 in 50,000 live births, Dr. John M. Routes, medical director of Allergy/Clinical Immunology at the Children’s Hospital of Wisconsin, told

“Basically, you lack a certain type of white blood cell called a T-cell,” said Routes, who has done research on the condition. “You pretty much lack a functioning immune system.”

That makes the babies “very, very prone to infection,” he said. Sure enough, Seth’s mother, Leanne Lane, has blogged about his being restricted to a hospital room to avoid germs, adding that she scrubs her hands and puts on a mask and gown before seeing her son.

Jade Ruthven, a family friend who launched a GoFundMe page for Seth, told the Lanes remain optimistic, despite being unsure about Seth’s future.

“I honestly don’t know how they cope — as far as I’m concerned, they deserve a medal,” she said.

Ruthven added that the family, who also has another 5-year-old son, is shocked by all of the support Seth’s video has generated.

“This wasn’t a planned campaign,” she said. “It was really for friends and family, to show Seth that they all care, even though they can’t be with him in person.”

As for the boy in the “bubble,” he’s a trouper, too.

“Seth has the most amazing personality, brilliant sense of humor, always really happy unless he’s tired or feeling under the weather like most people, really,” Ruthven said. “He’s a proper 5-year-old boy. He’s got great manners and is polite to everybody — also has a cheeky side!”

If SCID is detected early enough and a bone marrow transplant is done, the survival rate is about 95%, Routes said. If the disorder is detected later on and the child has already begun to get sick, success rate of a transplant goes down to approximately 60-65%, he said.

This article was originally published Mar. 18, 2015 at 5:43 p.m. ET.