Hello Friends and Family!

On June 4th, 2017, our son Peter will turn 8 years old, and Peter Sr. and I will be lacing up and hitting the roads of Vermont, running “The Covered Bridges Half Marathon” to celebrate our amazing little boy, and to raise money for an important organization called "Unique". 

At the age of 13 months, following numerous neurological evaluations due to concern that he was not meeting developmental milestones, Peter was diagnosed with a rare chromosome disorder, called 5q14.3 Microdeletion Syndrome. While meeting with the geneticist at Children's Hospital Boston, we learned that of the 19 known cases worldwide (19!) none of the affected individuals were able to speak, most were unable to walk, most had seizures, and all had severe intellectual disability. Many also had autism, repetitive movements, and poor eye contact. That was all of the information we were given. When we asked how many cases they had at Children’s Hospital, the answer was "none." It was hard to believe that our child would face such challenges in his life ahead. It was also very difficult to have such little information about this diagnosis. We were completely in the dark. 

Several months later we learned about "Unique", an organization whose mission is "to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness." 

On their website, www.rarechromo.org, we learned real life information about individuals with 5q14.3 deletion, provided by their families, assembled and explained by the medical informational staff at Unique. We saw pictures and read descriptions about these children. We were provided contact information for other families around the world, and learned about their children's abilities, therapies, and progress. Now, seven years later, there are over 200 families connected, and we exchange information, strategies, frustrations, support, encouragement and milestones. It all started with Unique.

Back to Peter- well you all know how incredible he is! While developmentally he is about 18 months old, he makes steady progress. He started to walk with a walker at age two, and walked away from it shortly after his fourth birthday. He does not speak, but is learning to communicate with picture symbols and simple sign language. His seizures are controlled with medication. He loves music, lights, and playing the piano and drums. His smile and laughter are simply beautiful. He brings out the best in those around him, and makes us all slow down and appreciate the beauty in life.

Please consider donating to Unique, and especially check out their website using the link on this page to learn more about this incredibly important organization. It means the world to us! 

Many thanks,

Suzanne and Peter

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.