Thursday 12-year-old Noah Dennis of Orlando will raise a banner urging awareness of schizencephaly, calling attention to a disorder that causes in utero stroke at around 5 to 7 weeks gestation. The banner is being flown by Liana’s Ransom Pirate ship Capt. Joseph Tilley, which will be docked at the Conch House in St. Augustine. From the oldest city the ship will travel to four ports to visit other families dealing with the same condition as Noah.
Final stop will be Halifax, Nova Scotia, where a second fundraiser will be celebrated for a young girl named Danna.
It was Danna’s picture that Tilley first saw and decided to help spread the word of this disorder. Noah was invited to be the one to raise the banner because of his involvement in making individuals aware of schizencephaly.
The occasion will also mark the second year of celebrating a day of awareness of the disorder.“As it stands right now Noah is one of the oldest children with Bi lateral schizencephaly,” according to his mother, Tricia Dennis. Describing her son as an “amazing little boy” and “an inspiration to so many,” Dennis notes that “as his mother, I have seen how much love and happiness he has brought to my own heart. And I have dedicated my life to carrying on his voice for every family touched with this disorder.”When he was born, she adds, she was told that Noah would not live past one day.
Dennis has started a nonprofit group for research and medical information as well as a place for parents to get help and find comfort.
May 19, 2012, Noah’s birthday, was the first Day of Awareness.
“We are overwhelmed with happiness, and we know how huge this will be as many media outlets are already following the voyage of the banner and the story” of schizencephaly, Dennis notes of the pirate ship’s role.
The story of the disorder is also being shared through Wearerare.org , a nonprofit group formed by three mothers with children of schizencephaly. It is headed by Dennis and a business partner who met Noah eight years ago “and fell in love with his story,” says Dennis.
It’s been a difficult road, Dennis wrote in a story about Noah and schizencephaly, especially since Dennis is a single mother, and accomplishing “everything we do to help others with fundraising and events, as well as meet for medical research, speaking events and counseling new families.”