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 

Family sky tower picture 

Hotel chillin'

Wesley's Dad and I with little sister Ava 

Wesley and his Dad at the tinker work shop at the Children's Museum

Our dear friend Caitlin and her son Timmy

Wesley's Dad, Wesley, our dear friend Susie, and her grandson Timmy

Wesley hanging out on an anchor at the pier 

During Wesley's Echo-cardiogram

Watching movies on the airplane next to Daddy 

Have a warriors heart, 

Wesley's Mom 

Breaking The Stigma

"When did you realize there was something wrong with him?"

The words shot out as if she'd asked me how old I was. Casual. Curious but hurried.

I said "Excuse me?" 

And she repeated herself; 

"When did you know something was wrong with Wesley?" 

Again there it was. A little less casual. A little more impatient. She was probably wondering why I just wouldn't answer her question. 

I replied "There is nothing wrong with him." 

"What about his disease?" She said.

"Oh, you mean the day we found out that Wesley is more special than we thought he was? May 8, 2015 at 11:54 am."    (Hunter Syndrome/MPSII)

My tone had turned to stone. I hate that question. It's on the list of no-no questions that you just don't ask special needs parents. I especially came to hate it before we knew and little children would ask me or Wesley's Dad that same question. 

I know she didn't know. Most people don't. That's how the world is; if someone is different it must be wrong. If it's not shiny and picture perfect it's a flaw or wrong. And anything else that doesn't fit into that normal box tends to make people uncomfortable. 

My family doesn't fit into that box because of Wesley's disease. Special needs children are some how only acceptable when silent and they do not disturb anyone else. It scares people because they don't know how to respond. Wesley may be different but he isn't wrong. There is nothing wrong with him. Does he have extra challenges? Will those challenges keep getting harder? Does he have a genetic disease? Yes. But does that make him wrong? Is there something wrong with him? No. Being born with a disease that no one has any control over does not make him wrong. 

No one wants anything to be the matter with their child. I understand that. I spent many days and nights praying that he was fine and healthy and that everyone was reading too much into it. If they all could grow up happy, care free, and die of old age that would be ideal. Though sadly, the children with MPS II don't get that ideal. As a parent I live with that fact daily. 

And please don't take me saying "no there is nothing wrong with him" as denial - because it is not. It's about breaking the stigma that different is wrong. 

If you are curious about someone's condition or why they are special, ASK. 

Most people are more than willing to share! 

Here are better questions:

What challenges does he face?

What makes him special? 

What is he working to overcome? 

And they will, more than likely, be very glad you asked, and happy to share. 

***Please keep praying. We need all the prayers we can get as we travel to Chicago on Sunday to be evaluated for the Intrathecal Trial that will help save Wesley's brain from further damage - if he gets in. I will update more about that this weekend. 

Have a Warriors Heart, 

Wesley's Mom

For more information on the Clinical Trial for MPS2, check out this link and scroll down the page to MPS2 (passed MPS1):   http://mpssociety.org/clinical-trials/