As posted on the Facebook page, the annual Walk-for-Research was a woderful sucess. I enjoyed seeing our favorite company reps (waves to Jen at Vitaflo) and talking with the team from Biomarin. It was also our first event where all three nutritionists from the regions we serve were present! While we raised more money than expected, that was not the greatest thing to come out of the walk. The greatest thing happened time and time again during our last hour there. It was the scraps of paper being taken out of purses and bags, hastily written on and handed to the person nearby. It was the sight of connections being made within the ever expanding PKU family. THAT sight made all the months of hard work worth it times 1,000.

As for Owen and I, we are making due with the challenges the Lord has placed us with. Today is Owen's annual appointment at UVA and I am hoping that his team can do more for him than his PCP has. There have been some new brain function symptoms that have both of us concerned. I won't get into details, but it is along the lines of what an off-diet or poorly managed PKU patient would have. That's scary because Owen is very much on the low-phe diet, takes Kuvan regularly and has his required amount (sometimes more) of amino acid formula every day. There really is no reason for it to be happening. However, there is one thing that must always be considered. Owen is of the first generation of "Diet-for-Life", the first group of PKU children to receive proper care throughout their entire lives. No one knows what will happen to them as they get older, what the long-term conditions have an higher chance of happening, despite the best of care. We are hoping that his team will refer Owen to a new neurologist who can then order an MRI (he has not had one since age 19) and another cognative function test. We had one done the week before Owen started Kuvan two years ago and it would be excellent information for both us and Biomarin. We are hoping that today the team decides to take a more active, agressive role in Owens care.