Sunday, August 16, 2009

Quest for Qavah

After we received the results of Qavah's genetic testing last spring, we were told that there were two other children in the world with a deletion on chromosome 3q29. In a fleeting thought I wondered if it was possible to find them. After months of research and joining a support group for people with chromosome disorders, I have found them. One lives in England and is a cute little boy. The other is a two-year-old girl living in Phoenix. I've been in communication with both parents and the similarities in our children is remarkable. I don't think it is just a coincidence that we have found each other. It was wonderful to speak with someone else about the challenges Qavah faces both now and in the future. Another thing we have in common is that we are all praying for a miracle.

This coming week we are going to meet with Qavah's doctor who has been out of the office for two months on maternity leave. This is the chance we have to share this new information with her. I hope in the near future that the doctors of all three children will put their heads together and try a treatment plan. All three are transfusion dependent and have an overload of iron in their bodies. So far, we have turned down steroid therapy, which annoyed our hematologist. But Paul and I are convinced that Qavah would not do well on steroids. I was able to discover that the other two children were put on steroids, didn't respond, and have suffered some side effects as a result.

We continue to pray for wisdom to meet the needs of both of our girls. And added to the mix of their physical needs is the need to feel normal and to enjoy normal activities. We are thankful for every good day we have, and thank God regularly for supplying us with little times of delight.