In October of 2006, both were diagnosed with PNP Deficiency. They are two of just 55 diagnosed cases worldwide. A bone marrow transplant could possibly correct the T-cell deficiency in their immune systems. So we met with specialists at Duke University Medical Center. Our insurance battles began almost immediately.
Six months later, while organizing bone marrow drives to find donors for the boys, we began to recognize how devastating the transplant process is to a family. We started to see the financial toll the transplant would take on our family. We called COTA. Within weeks, our friends, family members and colleagues launched a COTA campaign.
July 5, 2007, was a special day – it was Transplant Day! Both Brayden and Trevin received cord blood transplants within a two-hour time span. Both boys did very well. However, the transplants are not as critical as what happens afterward, so the waiting game began.
Within a month, it was clear that Brayden’s transplant was off and running. However, Trevin’s was not going so well. We were devastated to learn that he may need a second transplant.
Brayden and Trevin celebrated their birthdays in our North Carolina apartment on September 2nd and October 6th. The boys received gifts by mail and many wishes were posted on their COTA website guestbook, but due to their compromised immune systems, visits were limited. These were bittersweet celebrations.
Finally, in late October, we got good news … Brayden had 10% donor cells. Just a bit earlier, the doctor stopped Brayden’s immunosuppressant drug regime to see what would happen. The results were the miracle we had hoped for.
On November 14, 2007, Trevin received his second transplant. Our journey is not yet at the end. So we wait … again. And we hope for a miracle … again.
Visit www.cotaforbraydenandtrevins.com to learn more.
More on this story to come…