Dr. van der Knaap

I am so far behind in my blogging, but I have to get today's good news down in the next few minutes I have before going to pick up kids from school. Then hopefully I will go back and fill in the info on everything else that has been going on later. I've been working on getting all of Bryce's medical records together so that I can send them to the ULF for their 2nd opinion program. It is taking so long to get the information that I need which is really frustrating. But, lately on the leukodystrophy message boards where I talk with others who have children going through the same type of stuff Bryce is, people have been taking about a certain Dr. Marjo van der Knaap from the Netherlands. She has worked with a lot of people and has helped many of them to know which type of LD they have...or if it is not a LD at all. She has also discovered which gene is affecting certain children, which has led to names of some of the newer/rarer leukodystrophies. Since she is one of the Doctors on the ULF team, I have felt kind of funny about getting in touch with her directly...until yesterday. I finally have had enough waiting and getting answers that just aren't OK with me. So yesterday I typed up an email and sent it off to her. I briefly explained Bryce's situation and asked her if she would take a look at Bryce's MRI's. She emailed me back this morning asking me to send them right away and she said she would be happy to take a look at them. I don't know if it will get us anywhere, but I sure hope so!