Levon is a fraternal twin and was born in August of 2009.
Levon is pure joy, laughter and absolute light - but he struggles to do even the simplest things that his twin brother can do.
Levon was diagnosed with a very rare and difficult disorder called MECP2 Duplication Syndrome in February of 2012. He is non-verbal and did not start walking until right before his 4th birthday.
His smile lights up a room. He is our inspiration.
In 2013, we decided to attend the 2nd annual MECP2 Family Conference. This was the impetus for us to create a full length feature film documentary about our son and our journey called, Levon's Light. By bringing our son to these experts of MECP2 Duplication Syndrome at Baylor College of Medicine in Houston, Texas, we hoped to learn more about ourselves and our son and hear about the amazing research that is taking place in Houston! With a number of families, doctors and clinicians coming from all over the world we wanted to film and capture the strength, motivation and determination pushing these individuals to find new hope in a pretty grim diagnosis. Since 2013, my husband and I have made a total of 5 films for the Rett Syndrome and MECP2 Disorders -- to share with our community as a tool to bring awareness to our disorders and help raise funding for the critical research that is happening right now - to find a cure!!
~ For Levon. For all of our amazing children. Please Join the Fight.