Brothers battle birth without an immune system


UPDATED: Tuesday, October 14, 2013 --- 11:00 p.m.
Reporter: Phil Levin

Two Madison brothers are both fighting a rare disease that leaves them susceptible to illness with weakened immune systems.

14-year-old Joshua Osborn and his 3-year-old brother Tim have Severe Combined Immunodeficiency (SCID), sometimes called "Bubble Boy Disease," a potentially deadly but rare condition that may affect less than 100 newborns each year in the United States.

NBC 15 first met Josh in February, 2010 before he would spend nearly three months in the same room at a Washington, D.C. hospital. After two bone marrow transplants with his mother Julie as a donor, Josh has an immune system strong enough to allow him to attend school and live a nearly normal life.

When Julie discovered she was pregnant with their second son, she was shocked to receive the same diagnosis twice.

"When we got the call that he had the exact same disease, I cried and cried and cried, I couldn't believe we were going to go down this road again," she said.

Like his older brother before him, Tim will need to wear a mask outdoors and limit his time outside his house for another couple years. Instead of a bone marrow transplant he received gene therapy which his parents say looks promising so far.

In 2010, SCID screening was added to the 29 genetic disorders commonly tested for in the United States.

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POSTED: Friday, February 26, 2010 --- 6:15 p.m.
Reporter: Chris Woodard

Tonight 10-year-old Joshua Osborn is about to go through something many of us could never imagine.

Eight months of isolation, closed into the same room, at the same hospital await him.

His parents hope it can bring an end to his 10-year struggle with a rare disease.

After years of waiting and hoping the Osborn's are getting their shot.

Since birth life has been a little different for Osborn.

His mother Julie says, "You think you're coming home from the hospital with a healthy baby boy and to find out something different was a shock."

Joshua was born without an immune system. He suffers from Severe Combined Immune Deficiency, or SCID-ADA, a one in a million disease.

Julie says, "Did I want to go down this road? Not necessarily. But when I put it in perspective of what other families deal with I do feel blessed that it hasn't been worse."

SCID is more commonly known as bubble boy disease, named after David Vetter a boy from Texas who spent all but the last few days of his 12 year life in a germ free bubble while doctors looked for a cure.

Things have changed a lot since then.

Joshua's dad Clark says, "We've always probably been a little more cautious than the average parent but not a lot."

Julie says, "Almost everybody that asks me says does he live in a bubble. If they don't know him they still wonder."

Now 10-years-old Joshua has been through a lot, including a failed bone marrow transplant and a week in intensive care at 3-years-old that almost ended his life.

Clark says, "No contest that was definitely the hardest time with him."

Since then he's had regular trips to Duke Children's Hospital in North Carolina, monthly IVs and weekly shots in his legs all to basically give him a temporary immune system.

Joshua says, "It's sort of painful."

But for this little fighter there is new hope.

Julie says, "It was a relief to know we were going but it's going to be a busy week to get it all done."

Earlier this week Joshua's parents got word he'll be the 7th child selected to participate in a new gene therapy trial at Duke Medical Center.

The family will relocate to the hospital where Joshua will be forced to isolate himself in a hospital room for anywhere between 3 and 8 months. They leave Sunday.

Clark says, "It was an intimidating thought... with him not being able to leave that room."

Julie says, "To know that he could possibly be completely healed and not have to have medicines anymore, it's worth it."

The most simplified explanation is that his own marrow is taken out, the defect with the immune system is fixed and they put it back in.

Josh says, "I know it's not going to be dangerous but there are risks I heard. I'm not really afraid of that."

For mom and dad it means picking up and leaving all while Julie is pregnant again.

They're expecting a son who they just found out will be born with the same disease.

Clark says, " When I told him that his brother was going to have the same condition he did, he just smiled and said, well I'm OK. I'm fine."

Julie says, "I think god gives us what we can handle and there is purpose."

It's a life filled with question that may finally have an answer, but it will take a few months of isolation to find out.

Joshua says, " I'm not really afraid of that no."

If you want to follow along on Josh's journey his dad has created a web page that Josh himself will be updating as often as he can.

To check it out just head to www.JoshuaOsborn.com

Clark says the best thing that's come out of Josh's sickness is newborn testing.

In January of 2008 Wisconsin became the first state to begin testing newborns for the disease which Clark says increases the survival rate from 50 -percent to close to 100-percent.

The Osborns were very active in lobbying for that testing and still hope all states will jump on board.


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