About Josh

Joshua was born on March 16, 1999.  He was a happy, healthy-looking kid and we had no clue anything was wrong. At about 3 1/2 months, without ever becoming ill (mega-miracle!), Joshua was diagnosed with Severe Combined Immune Deficiency-ADA (SCID-ADA). SCID is also known as the “Bubble Boy Disease”.

Josh received a “haploidentical” bone marrow transplant at Duke Children’s Hospital in Durham, NC in July of 1999 and he returned to Wisconsin in December of that year. He remained healthy until late February of 2002 when his transplant apparently failed and he ended up in PICU for a week with RSV and Pneumonia. During that faith building trial, God gave is this promise from Psalm 91:

“Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.” Ps 91:14-16

We have stood on this promise ever since.

Josh got out of the hospital in 8 days. As we left, the nurses told us that they did not think he would make it when he first came in and that a child with a normally functioning immune system would have been in there for at least 3 weeks. That was God. I don’t know why He doesn’t heal them all, but He healed this one, using some awesomely skilled medical folks as well in the process.

He’s been just about perfectly healthy ever since. His immune system never recovered, so later in 2002 he was put on a medicine called “Adagen” (PegADA) and he has been on it for the last 7+ years. This is only an option for ADA SCID kids, so had he had another form and the BMT failed, he would have been in trouble. He also receives monthly IVIG treatments to help with his immunity.

In 2005, we received a phone call from Joshua’s doctor at Duke telling us about a Gene Therapy trial that was starting at the National Institute of Health in Bethesda, MD. and we were encouraged to look into it.  We did so that year and have been waiting since that time for the right opportunity. NIH extended an opportunity to us in the fall of 2007 that we felt we had to decline at the time. And now, shortly after discovering that in July, Joshua will have a brother who will also have the SCID-ADA condition, the invitation for Josh from NIH was extended again and we felt the time was right/now.  So here we are.

Thanks for much for visting Joshua’s blog. If you have any questions, see the contact page for contact info.

God Bless You!


Clark, Julie, Joshua & Timothy (we think:) Osborn