It is hard to believe it has already been three years since Bennett was diagnosed with a chromosome deletion, known as Kleefstra Syndrome (KS). KS is a very rare genetic disorder (only around 500 cases have been diagnosed around the world) that is characterized by a host of medical challenges and varying degrees of intellectual and physical disabilities.
For Bennett , KS has meant missed and delayed milestones since birth, an inability to verbally communicate (but he’s learning!), sleep disturbances, difficulty regulating his emotions, and hundreds of hours of therapy amongst many other things. Simply put, having KS means that Bennett has to work extra hard each and every day to be the best that he can be.
Bennett has already overcome so many challenges, but we know that there will be many more to come. Nathan & I will do everything we can to help Bennett be happy and to reach his full potential.
This along with the fact that research into KS is relatively “”new”” (KS was only officially recognized in 2010), made us incredibly excited to hear about a new US-based organization, IDefine (IDefine.org) that was launched just this past month. IDefine has a mission to advance treatments for people living with Kleefstra Syndrome and ultimately, find a cure for KS.
IDefine has three areas of focus: establishing a Kleefstra Syndrome Center of Excellence @ Boston Children's Hospital (we were fortunate to get Bennett an appointment with Boston Children’s-He will be working with a doctor who has has studied KS and has had other KS patients; something we have not experienced with any of Bennett’s doctors yet), funding scientific research and development, and building a network for community outreach and support.
All proceeds from this fundraising campaign will be routed through IDefine’s Fiscal Sponsor (Player's Philanthropy Fund) and allocated directly to IDefine in support of defined Kleefstra research projects.
Bennett, along with all of his KS brothers and sisters (Check them out here!) will benefit so much from any support you are able to provide.Thank you so much for your support!
Erica, Nathan, Camden, Bennett & Archer