Give Cole a Voice
Donation protected
Our friends at the Arden Athletic Club, located in Washington, PA are hosting an annual Passed Members Ride on July 8, 2017. This will be the 5th year memorializing the passed members and our son Cole was chosen as the 2017 beneficiary. This GoFundMe page was created for those wanting to donate but unable to attend the event in July. Here is Cole's story...
Before our 3 year old son Cole was born, he was diagnosed with a rare brain condition called agenesis of the corpus callosum, also known as ACC. The corpus callosum is a portion of the brain made up of more the 200 million neural fibers that connect both hemispheres of the brain to facilitate communication, of which Cole’s never formed. It acts like a super highway for information, thoughts, ideas, and actions to pass from one side of the brain to the other. This malformation may manifest as a severe syndrome in infancy or childhood, as a milder condition, or as an asymptomatic finding. For Cole, this has brought about many challenges including global developmental delays, very low muscle tone/strength, speech inabilities, and epilepsy.
Cole is an inspiring young boy filled with love and joy that is all too uncommon in this day and age. He consistently surprises us and his doctors on overcoming obstacles once thought to be out of his reach. He has a determination in him that leaves no room for failure. When therapists and counselors provide him with a difficult task that is otherwise set as an unachievable pillar, Cole finds a way to accomplish it. Not only does he overcome the obstacle, but he does it with a smile that makes people realize the beauty that life has to give.
Cole’s ability to communicate has been an obstacle he has been climbing for quite some time. So in turn, there is a device that acts as his voice. His “talker” provides Cole a means of communication when he can’t get the message out verbally. It consists of buttons that piece together words and it provides audio formatting that speaks when Cole cannot.
It is our hope that with this fundraiser we bring awareness to ACC as well. The National Organization for Disorders of the Corpus Callosum (NODCC), was the first place we found helpful people and information to give light to ACC. They are the leading organization for disorders of the corpus callosum seeking to raise the profile, understanding and acceptance of these disorders through education, networking, advocacy and being a catalyst for research. The money raised will be used to help pay for Cole’s “talker” and some will be donated to the NODCC.
If you are able to attend the event, it's on July 8, 2017 at the Arden Athletic Club located at 25 Seik Road Washington, PA 15301. Registration for motorcycles starts at 10:30am and the ride begins at noon. The riders will return around 4:00pm and a dinner will be provided for anyone wanting to join. The cost is $15 for riders and $10 for non-riders (dinner). Any donations, Chinese auction baskets, food or help would be greatly appreciated. My God bless you for your kindness.
Love,
Tim and Deb Harvilla
Before our 3 year old son Cole was born, he was diagnosed with a rare brain condition called agenesis of the corpus callosum, also known as ACC. The corpus callosum is a portion of the brain made up of more the 200 million neural fibers that connect both hemispheres of the brain to facilitate communication, of which Cole’s never formed. It acts like a super highway for information, thoughts, ideas, and actions to pass from one side of the brain to the other. This malformation may manifest as a severe syndrome in infancy or childhood, as a milder condition, or as an asymptomatic finding. For Cole, this has brought about many challenges including global developmental delays, very low muscle tone/strength, speech inabilities, and epilepsy.
Cole is an inspiring young boy filled with love and joy that is all too uncommon in this day and age. He consistently surprises us and his doctors on overcoming obstacles once thought to be out of his reach. He has a determination in him that leaves no room for failure. When therapists and counselors provide him with a difficult task that is otherwise set as an unachievable pillar, Cole finds a way to accomplish it. Not only does he overcome the obstacle, but he does it with a smile that makes people realize the beauty that life has to give.
Cole’s ability to communicate has been an obstacle he has been climbing for quite some time. So in turn, there is a device that acts as his voice. His “talker” provides Cole a means of communication when he can’t get the message out verbally. It consists of buttons that piece together words and it provides audio formatting that speaks when Cole cannot.
It is our hope that with this fundraiser we bring awareness to ACC as well. The National Organization for Disorders of the Corpus Callosum (NODCC), was the first place we found helpful people and information to give light to ACC. They are the leading organization for disorders of the corpus callosum seeking to raise the profile, understanding and acceptance of these disorders through education, networking, advocacy and being a catalyst for research. The money raised will be used to help pay for Cole’s “talker” and some will be donated to the NODCC.
If you are able to attend the event, it's on July 8, 2017 at the Arden Athletic Club located at 25 Seik Road Washington, PA 15301. Registration for motorcycles starts at 10:30am and the ride begins at noon. The riders will return around 4:00pm and a dinner will be provided for anyone wanting to join. The cost is $15 for riders and $10 for non-riders (dinner). Any donations, Chinese auction baskets, food or help would be greatly appreciated. My God bless you for your kindness.
Love,
Tim and Deb Harvilla
Organizer
Debra Harvilla
Organizer
Hickory, PA