Matt Zolecki (Plainfield, IL)

By Missy Zolecki

We entered into the Phase II STX209 trial in August 2009. After completing the 2 portions of that trial, we were offered an opportunity to begin an open label extension. December 2009, Matt began that medication. We had been through the gamut of medications prior to starting this trial, without much success at controlling his challenging behaviors. He had gained a tremendous amount of weight as a result of the side effects from the medicine. He had significantly regressed in school as well.

As you can see the physical difference is amazing. He was able to discontinue the medication that was causing the weight gain. He made many other changes. In 2009 it took 5 people to hold him down to get his teeth cleaned at a specially trained pediatric dentist office. He now goes to our family dentist, completes his visit while I remain in the waiting room and doesn’t require any holding! He has become interested in running and has now competed in the Special Olympics, run a 2K and 2 5k’s!!!

We have traveled to one of our favorite places, Disney World, multiple times. It wasn’t until last summer that he showed interest in riding some of the more intense rides. He was so proud of himself after going on those rides, as were we! We have seen his ability to verbally communicate grow. Increased language, with also an increase in conversational speech. We have seen him have imaginative, interactive play! Although that may not sound like a big deal, but for years we have bought him gifts hoping he would play with them at least partially appropriately. Finally, he is!!

Birthdays should be a joyous time, but for Matt they have always been overwhelming! Each year since starting this medicine we have been able to watch him have his entire lunch room of peers sing to him! We had not sung Happy Birthday for years, as he would have an intense meltdown as a result. This past year he requested a birthday party. He told us he wanted to go bowling, and even made his sister write a list of all the guests he would like to invite! He thoroughly enjoyed his day, as did we!

Our quality of life has changed in a way we never anticipated! We are very nervous about what the future holds as we wean off of this medication. We hope we don’t return to where we were in 2009.