Wyatt Lungarini (Ansonia, CT)

By David & Sharri Lungarini

We are parents of a special little 4 ½ year old boy named Wyatt.  He began receiving intervention services in 2009. The level of services and the amount of people we worked with increased dramatically in February of 2011 when Wyatt was diagnosed as being on the Autism Spectrum. Soon after, he was also diagnosed with the genetic disorder Fragile X Syndrome, which is the #1 known genetic cause of Autism.

Our family and our home became hosts to a special group of Physical Therapists, Psychologists, Speech Therapists, Occupational Therapists, Developmental Therapists, and Board Certified Behavioral Analysts five days a week all through 2011. It goes without saying that these services ramped up at what was a very painful and difficult time for our family. Wyatt was totally withdrawn into himself and every day we ached at how much of a struggle his life had become. The one light piercing the darkness was the incredible team of professionals who worked tirelessly with him and with us.  The Birth to Three Team was as helpful during our dealings with the School System as we prepared for Wyatt to turn 3 years old. Thanks to their tireless efforts we had an incredible transition from Birth to Three to the ACES school in North Haven Connecticut where Wyatt has been for over a year.

Despite these years of hard work for hours a day, 7 days a week, the honest assessment is that while Wyatt has made much tangible progress he is still essentially a toddler developmentally, non- verbal, filled with anxiety, and largely trapped inside of his own head.  Therapeutic and teaching approaches have allowed Wyatt to make advances but they are small and incremental.  The stark reality is that there is little to no chance that Wyatt will ever be able to live on his own, be mainstreamed in school, or enjoy the thousands of things we all take for granted in life.

We have followed with great interest a drug trial that has been ongoing through Seaside Therapeutics for STX209.  The study has been in progress for over 3 years and we know many people with children who are included in the trial.  We have heard the success stories and have seen the transformative effects.  Children who were riddled with anxiety, trapped in their own minds have come out of their shells.  They have made friends, laughed, played, lived.  Parents have heard “I love you” for the first time or have gotten their first hugs or have been able to go to a restaurant for the first time in years.   We know that there is no miracle drug, and that everyone reacts differently to medicine.  However, we were filled with hope that this medicine combined with our current school and home programs would represent a potential for a much more fulfilling life for our son.  We knew that STX209 was in open label testing and were very hopeful that FDA approval would be available within the next couple of years.  However, when we heard that the trial was suddenly ended, so close to the finish line, we were devastated.  This drug could impact thousands of lives, and the end of the trail forces children already taking the drug back into the Fragile X box and it prevents a great opportunity to ever let Wyatt out of it.  We love our son, we need this trial to continue, for this hard work and progress to have not been made in vain, please help us shine a light in the darkness.