I'm sure most of you have never heard of Smith-Magenis Syndrome (SMS), unless you're lucky enough to have met Lucas!  For those who don't know, SMS is a complex developmental disorder, which, in Lucas' case, is caused by a missing portion of his 17th chromosome.   You can learn more about SMS by clicking here! 

Lucas is the smart, funny, mischievous two and a half year old son of Cass and Zack D'Agostino. Since he was born, he has been in and out of Boston Children's Hospital for multiple surgeries, procedures and emergency room visits.  He does have a Complex Care Team, however, because SMS is not something most doctors see on a regular basis (or at all), they are looking for more direction on how to help Lucas progress.

This Sunday, Cass, Zack, Lucas and Lucas's big brother Jacob will be driving to the Smith-Magenis Clinic in Lewisburg, PA, the first specialty clinic in the country for people with SMS, so Lucas can be seen by Neurodevelopmental Behavioral Pediatrician, Dr. Scott Myers, who specializes in SMS.  Dr. Myers will be able to assess Lucas and coordinate with his Complex Care Team at Boston Children's Hospital to develop a solid plan for his care going forward.  

This is all really exciting news! Unfortunately, insurance companies don't always see things the same way patients do.  After debating with Harvard Pilgrim, Cass was told that, because she has a PPO, they will not cover the $1200 doctor visit.  $1200 doesn't sound like a ton of money, but add to that taking time off work, renting a vehicle, driving 400 miles, and paying for a hotel room, it adds up very fast.   I'm hoping we can help Cass and Zack cover some of these costs, so they can spend their time at the clinic focusing on what is most important.