A 5-year-old British boy who lives in “a bubble” because of his weak
immune system has become an Internet sensation after asking people to
wear yellow to support him.
Seth Lane was born with severe combined immunodeficiency, commonly known as “bubble boy disease.”
He does not have enough white blood cells to fight infection, so he has
to live in a sterile environment in the hospital. He’s been in the
hospital for the last few weeks awaiting a bone marrow transplant.
To raise awareness about Seth's condition, his parents filmed him
asking people around the world to wear yellow on March 27 “to show
(Seth) how much support” he has, on their blog, Our Little Hero.
In the short video, Seth holds up bright yellow signs that were clearly
made by an adult. He asks people to take pictures of themselves dressed
in yellow and post them on social media with #wearyellowforseth.
“And my mummy and daddy will show me all the pictures and print them for my room,” one sign says.
His mother, Leanne, said she and the boy’s father, Nik, will also place
a pin in a map in his room for every place from which they receive a
photo.
Nik is donating his bone marrow to his son for the second transplant — a
first one failed in 2010. The family is holding out hope this procedure
works and rebuilds Seth's immune system, although Leanne said they’re
trying to be “realistic.” They took a family picture with Seth and his
younger sibling recently, just "in case."
“We did not have a picture of all 4 of us (other than one taken at
Halloween where we were all zombie’s covered in face paint!) and I felt
like I needed to get one in case we don’t get the chance again,” Leanne
wrote. “Seth is not guaranteed to get through the next 4 months.”
Seth’s short life has been full of challenges, Leanne said. He's spent
much of his life in the hospital. His parents are not allowed to have
direct contact with him if they’re sick, even with something as minor as
a cold sore, because of the harm that could be done, Leanne said. Even
when they're healthy, they have to scrub down and wear a plastic gown to
be allowed in the same room.
“Seth’s getting a little bored in his room and is become more and more
like a coiled spring waiting to pounce….I’m not sure how he will cope
with another 3 or 4 months in here!!!”
Seth is not alone. SCID affects about one in 100,000 babies in the
U.S., according to Be the Match. There are more options available for
children with SCID now than when the disease entered popular culture in
the 1970s with the famous "bubble boy," David Vetter.
No comments:
Post a Comment