Clinical Trial at the University of Utah

Next Tuesday Nicholas, my mom, and I are driving to Salt Lake City, Utah to enroll Nicholas in a clinical trial for SMA.

We are driving because I am terrified of Nicholas flying on an airplane and being exposed to swine flu or any cold for that matter. Kids with SMA tend to have problems with their respiratory systems and are prone to pneumonia which can cause respiratory distress, so it is important to keep him away from that germy plane air which is why we will be making the 12 hour drive from Washington to Utah.

We have appointments on Thursday and Friday to get a baseline on Nicholas' SMA. Here is a bit of information sent to us by Dr. Swoboda's office: The “CARNI-VAL Type I” study for SMA infants aged 2 weeks to 12 months at the time of enrollment. The study requires 3 visits over 6.5 months to carefully and safely monitor the child’s health. Valproic acid, a drug used in this study, appears to be helpful in slowing disease progression in some children.

We feel lucky to be able to participate in this study since the cut-off age is 12 months 29 days. Thank you Jeanette for telling us about this study via Christie...otherwise we would have never been able to enroll Nicholas in time! We feel so blessed to have to many friends and family who genuinely care about Nicholas. So many people have offered suggestions for fundraisers, medical studies, and equiptment needs to help Nicholas in this journey with SMA. We are so lucky to have lots and lots of people who love us so much!

We are hopeful that this could help Nicholas live a longer, healthier life. Please keep us in your prayers as we make this long journey to help our baby boy.