Wesley's MPS Warriors: The End of Chicago

Hello,

I don't even know how to really start off this update. As it is sad and we are heart broken. Last Sunday, October 18, we packed up our family of 4 and got on an air plane -anxious, nervous, scared, and hoping that this trip would change our lives forever. We flew to Chicago to visit the children's hospital and get Wesley evaluated to see if he qualified for the experimental drug that has been saving and preserving the brains of boys with Hunter Syndrome. It is like the drug he gets infused every Friday but it is formulated to be infused in the central nervous system by a port surgically placed in the spine.

There were 4 days of testing. The first, a GCA test (General Conceptual Ability). A more comprehensive IQ test given to children. The requirement was a score between 55-85 to be considered for the trial. That same day he had an echo-cardiogram and an EKG to check his heart. The next day he had a physical exam schedule. Wednesday the day after that, a Vineland test .Thursday was the day a lumbar puncture and MRI were scheduled.

We found out at Wesley's physical appointment that Wesley did not score high enough to be considered for the clinical trial. His GCA was 47. His appointments stopped. Just like that, our hope was gone.

See, this clinical trial has been going on for about 5 years. In those 5 years the boys that have been given the experimental drug, lives have changed. Their brains are developing. They are learning. They are retaining new skills. This drug is working.

We wanted this for Wesley. We still want this for Wesley. Wesley and every single Hunter boy needs this. We are still looking at 3 years until this drug is passed by the FDA. That's three years of potentially, more than likely, losing skills. Skills that may never be regained even after this treatment is passed and he starts getting treatment.

My heart hurts for that time frame. For praying and hoping so hard he would qualify for a better chance at life and knowing this could be a game changer for his life. There are so many emotions with this. It feels like a second Diagnosis Day almost: sadness, heart break, loss, scared, hopelessness, worry, uncertainty. Feeling a sense of unfairness that the person who wrote the criteria for this trial is denying it to the boys who need it the most. Boys that are extremely delayed, like Wesley, and so many others that did not score high enough to even finish the rest of the screening process.

This is a very emotional time. I didn't expect it to be like this. I thought it would be yes or no. Quick, painless, just a decision. I guess my heart knew more than my brain -what was riding on this decision. A life. A different way of life. A better chance, a better quality of life. I know this isn't a cure but it could have helped him so so much.

If you would just pray for us. We would greatly appreciate it.

The rest of our days were spent at the Chicago Children's Museum, The Navy Pier, The Sky Tower, The Richardson's Farm; home of the largest corn maze, and lastly but most importantly visiting with some very dear family friends.

Here are some pictures from our trip!

Sky Tower view