Toddler Battles 'Bubble Boy' Syndrome

Imagine a life where the common cold or the tiniest germ could potentially kill you. That's the world toddler Mason Williams is living in.

Mason and his twin brother, Peyton, are growing-up in Indianapolis, Ind. Their father, Joe, is a contractor. Their mother, Rachel, is a medical secretary. They look like any normal family. But they're living anything but a normal life.

Mason is suffering from a rare and deadly disorder called SCIDS, severe combined immunodeficiency disease. The illness first became known to the American public in the 1976 John Travolta movie The Boy in the Plastic Bubble.

A ‘Time Bomb’

Like the character in the Travolta film, Mason's body doesn't produce enough white blood cells to protect him from any illness. The movie dramatized the real life world of kids separated from a world of germs by a plastic bubble.

Mason isn't surrounded by plastic, but he is trapped in a bubble of sorts. He is isolated with his family.

Dr. Joanne Kurtzberg, a leading authority on SCIDS, said Mason's illness is so severe "he's almost like a time bomb."

Kurtzberg said, "He looks very healthy, but he at any minute could contract an infection that a few days later would take his life. He wouldn't live to go to nursery school or go to kindergarten if he doesn't get a transplant."

Kurtzberg says Mason's only chance for survival is a stem-cell transplant, a transfusion of life building blood cells which can miraculously create a brand new immune system. The cells are usually taken from a parent's bone marrow, because they provide the best genetic match. She has pioneered transplant techniques to help SCIDS patients at North Carolina's Duke University.

But the transplants don't always work.

Eight years ago, Joe and Rachel's first child, Tyler, was born with "bubble boy syndrome." At first, they didn't understand why he was constantly sick.

"We even had a doctor who kind of questioned things, and would make little remarks. … And that makes you question yourself all the more. … If a doctor is questioning you, you start to think, well, maybe it is me," Rachel said.

Tyler was 18 months old before doctors figured out his problem. So the couple tried a stem-cell transplant to save the boy's life. Joe donated his stem cells from his bone marrow. But by then, it was too late. Tyler was too weak to fight off the smallest infection.

At barely 20 years old, Joe and Rachel learned a terrible truth about themselves. Each carried a deadly gene that might produce the same sad results as Tyler in another child.

After learning this, the Williams family decided not to have any more children. They couldn't bear the thought of having another child go through what Tyler suffered.

But they accidentally became pregnant again, this time with twins. Instead of joy, Joe and Rachel were filled with dread. They realized that one or both of the twins could be born with the same deadly disease.

Rather than terminate the pregnancy, the couple prayed for a medical miracle while clinging to their doctors' advice.

Lightning Strikes Twice

"They said we probably had better odds of winning the lottery than we did of having another child with this disease," Rachel recalls.

It was like lightning striking again. Peyton was healthy, but Mason was diagnosed with SCIDS.

Page
  • 1
  • |
  • 2
  • |
  • 3
Join the Discussion
You are using an outdated version of Internet Explorer. Please click here to upgrade your browser in order to comment.
blog comments powered by Disqus
 
You Might Also Like...