Toddler Battles 'Bubble Boy' Syndrome

The seasons change again and as the days of 2002 grow shorter, Rachel and Joe continue to worry about Mason's recovery. The new stem cells have been growing in his body for six months now. And his immune system is almost 50 percent of normal. Yet, he isn't growing. Mason is noticeably smaller than his brother Peyton and his fine motor skills are less developed.

By December, nearly a year since 20/20 first met the Williams family, the boys are approaching their second birthday, but there will be no party with other children, no celebration. Instead, there are only questions. Will Mason catch up to his brother? Will he ever look healthy? And most important, is the transplant working?

Medical Miracle

In early March 2003, a year since Mason's stem-cell transplant. His family is about to learn whether miracles really do happen. For a couple who has every reason not to believe in a happy ending, it is the moment of truth. Back at Duke University, Kurtzberg is about to make their every wish come true.

In her low key way, she tells Joe and Rachel Williams that the transplant has worked. Two-year-old Mason is no longer suffering from bubble boy syndrome. Numbed by years of fear and uncertainty, Joe and Rachel can barely believe what she's saying.

Kurtzberg tells Joe and Rachel that they have every reason to expect that Mason will have a normal lifespan and they need to start thinking of him as a normal child.

Kurtzberg's team has achieved the nearly impossible, beating a disease which usually kills children before they get to kindergarten.

The Williams' home is now a normal one with Mason welcoming new friends from the outside. Despite all he's gone through, he's outgoing and happy. And amazingly, his parents who once worried about every detail of his life, now need only give him daily medication and remember his regular check-ups like any other toddler.

Mason is looking at a long healthy life. But who will pay for this miracle? His medical bills, total well over $1 million, much of it not covered by insurance.

"I don't know how we're going to do it, but just to have him back is worth any price," Joe said.

Lightning struck them twice. But the Williams family survived. Peyton and Mason are now free to discover the world which for so long was off limits. And the family who dared not hope for a future is finally planning one.

If you would like more information and would like to contribute to a charitable fund for Mason Williams, write: "COTA for Mason W." Children's Organ Transplant Association 2501 COTA Drive Bloomington, Ind. 47403

or visit the following Web site: www.cota.org

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...