Sebastian's journey takes turn for the best
ZANESVILLE – You can see it in his smile: Sebastian Longstreth is loving life as he overcomes a host of medical complications.
His pulmonary hypertension? Gone.
His chronic respiratory issues? Improving.
His heart complications? Stable.
Though Sebastian is still on a ventilator, his dependency on it has lessened, said his mom, Shannon. He no longer needs a stomach tube to eat, and he's beginning to communicate more effectively with sign language.
"He's come a very long way," she said.
Sebastian recently began preschool education. Once a week, a special needs teacher from the Maysville school district visits him at his home in South Zanesville.
Sebastian is Shannon and Brandon's third son, after 15-year-old Caulin and 8-year-old Brandon Jr. Although he was born with a number of medical complications, including cardiac lesions, Down syndrome and respiratory failure, Shannon said, she views him as a blessing, someone who shows the world what people are capable of overcoming.
Besides, one look at Sebastian's Facebook page and you're bound to see a big smile.
"He's just awesome," Shannon said. "It's not a sad story; it's about the little things."
And it's that story of Sebastian's perseverance and bravery that Shannon wants to share on a national level. She's recently been campaigning to get her son onto Ellen DeGeneres' talk show.
To get noticed, she's partnered with Sarah Cahill, an 18-year old from New York who started a program after her younger brother was diagnosed with stage 4 liver cancer in 2012 that spread to his lung. Cahill's brother, Johnathon, has been in remission since November 2012, though her program, "Hope for Johnathon," is still going strong.
Sarah launched her first project in September, giving out Movie Night Baskets. She's donated hundreds of baskets to patients at New York hospitals. She also does hospital visits, and recently partnered with Kids Need More, a nonprofit camp for kids going through life changing medical issues.
"She's just amazing," Shannon said. "Between her and I, we're majorly creative."
Though Shannon and Sarah have reached out on DeGeneres' website, the best thing to get them noticed, she said, is the online support that both their efforts have garnered.
Since Sebastian was born, Shannon has documented his days and growth on Facebook, where 47,000 people now follow "Sebastian's Journey."
Shannon fills Sebastian's page with pictures and video of Sebastian waking up from naps, wearing his pants on his head, getting baths, and just smiling and having fun.
"Seeing what he's gone through, it gives them a better attitude," Shannon said of Sebastian's Journey followers. "He puts a different perspective in people's lives."
Not least of all Shannon's. She herself has taken on the bulk of Sebastian's round-the-clock needs. She has a background in medicine, as she earned a bachelor's degree in chemistry from Capital University.
"Prior to him being sick, I didn't have any use for it," she said. "Now, this is why."
He's scheduled to go to the hospital this summer to have his airways examined. It's the first time this year he'll make a trip for a checkup, a far cry from 2012, when he spent more than 200 days in the hospital, Shannon said.
She said she's amazed at Sebastian's improvements, though the goal is to get him to the point where he's independent and high-functioning. By this summer, Shannon wants to take her son on more trips out of the house to visit family and friends.
"Our goal is to get him to where he can take care of himself and not have to rely on somebody, and so far, so good," she said. "I started in the back of my mind that the journey doesn't really begin until we're visiting our people, our friends."
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