Great News for Gavin from the NIH

I just wanted to share the exciting news that the NIH (National Institute of Health) has selected Gavin to do the Natural History Evaluation in June. This is exciting news because it is a vital step in case Gavin gets picked for Gene Therapy. The waiting list for this evaluation is insane, but with lots of persistence, they were able to select Gavin to do the test in June. The evaluation will consist of intense medical evaluation from MRI, CT scan, enzyme study etc…pretty much they want to see Gavin’s baseline now so when he does undergo gene therapy, they can refer back whether he has made any improvements with the treatment. The NIH will be paying for our travel expenses and for the evaluation. I can’t stress enough how elated we are about this exciting news. For those of you praying for Gavin, God is truly listening to your prayers. This is such a hopeful sign for Gavin. I also want to clarify that this is not gene therapy, but a vital step necessary towards gene therapy. We leave on June 25th to Bethesda, Maryland and Washington D.C. for the evaluation and will be back on July 2, 2011. There is truly hope in everything you do for Gavin. We are holding on to all the hope we can get. Hope is what keeps us all alive!!!