I'll keep this post short, but I thought I would take a minute to explain why we have decided to travel to take our boys to specialists in other states. Right after learning of Jarod's diagnosis in March (and learning that this disease has no treatment or cure), we learned that there is a doctor at the University of Minnesota (Dr. Chester Whitley) doing a Natural History Study on MPSIIIA (exactly what our boys have). I called the University in hopes of getting Jarod into the study, only to find out that they only had funding for 25 children...and Jarod was #26. The study is in preparation for a possible human trial (intrathecal enzyme replacement therapy) which may happen in the next couple years. There is currently a Phase I and II trial happening in the UK and Netherlands and if the results look promising, Dr. Whitley will do a Phase III trial here. We wanted to go ahead and get Jarod plugged in at the right place. When we go to Minneapolis we meet with a whole team of specialists (genetic, cardiology, neuropsychology) who see MPS children every week. That's something you just cannot find here. Being that Jarod didn't get into the study, however, means that we have to fund these trips ourselves. We will now be taking Caleb there for his baseline testing January 22-27, 2012.
Also, in researching the disease many months ago I came across some information about a doctor doing a study on an experimental drug at the Children's Memorial Hospital in Chicago. We took Jarod to see Dr. Barbara Burton back in late April and were able to get him in. However, this study has very limited funding so we also fund these trips ourselves (much cheaper than Minneapolis!), but although the first batch of the drug (genistein) was provided for us, Dr. Burton has since run out of funding and we must now buy it ourselves ($1,000 per child every six months - and that's getting it at cost). We have been so blessed by all of the fundraisers and donations which make these trips a reality for us without all of the stress of figuring out where the money would come from otherwise. Thank you so much for that!