A book for Obie
Family of boy with rare condition getting help from a relative.
Terry Broadbent has written a special collection of travel stories for a special boy and his family.
Broadbent, a retired teacher, is a self-proclaimed romantic and will tell you that the first several chapters of his new book, Day Tripping in Main Land Nova Scotia, is a collection of places to see and visit in Nova Scotia, but the last part of the book is dedicated solely to the journeys of the heart.
“The gift (of love) comes in many shapes and forms but no matter how it arrives, accept it as its meant to be, a gift so special that no other could possibly take its place,” writes Broadbent. “Life holds many interesting challenges from one day to the next, but the possibility of sharing something so precious does not often come our way. We must be ever ready to accept it wholeheartedly and rejoice that we were among the chosen few.”
About two years ago, Broadbent started working on this collection of stories in an effort to raise money for his grandnephew Obie Broadbent, a toddler from Corner Brook who has been diagnosed with PURA syndrome, a rare genetic condition. This is the second book Broadbent has self-published for charity.
“The reason I wrote the book is to raise awareness about PURA and money to assist with the care of my grand-nephew,” said Broadbent. “He is unable to walk independently, or talk, and requires 24-hour care."
‘A BEAUTIFUL BABY BOY’
The book is partly a travel guide that explores the special places Broadbent and his wife have visited in Nova Scotia, but it is dedicated to Obie and the surprising heart journeys he has inspired in others with his rare condition. Obie was diagnosed with PURA Syndrome just before he turned a year old.
This condition occurs when the PURA gene is not passed down. This marker contains important information for a range of bodily functions. At three years old, he is a cheerful and charismatic little boy, but is completely dependent on the people around him for support and little is known about the long-term effects of his condition.
“He is a beautiful baby boy. His eyes look deep and touch your soul,” Broadbent said. “His grandmother, my sister, absolutely adores him. She thinks the sun rises and sets around him.”
He added that Obie is one of only two children in Canada to have this condition. The rarity and extent of his condition makes it very expensive to diagnose and treat.
Obie’s grandmother, Jane Broadbent, says that the family noticed immediately that he had difficulty feeding and regulating his body temperature, but were not sure why.
“We knew something was wrong, but he was a bit premature, so we thought maybe he would catch up as he grew,” she said. “This has been a gamechanger for all of us. He has turned our lives upside down. He can’t live without support. But he is so easy to care for — he is such an absolute joy — he has touched so many people.”
She can offer countless examples of how Obie seems to bring out the best in the people around him. Partly because he is so vulnerable and dependent on others, he offers people an opportunity to find their own gifts by helping him.
“He is exactly as his condition suggests, he’s pure love,” she said. “I can’t imagine my life without him now.”
Whether it’s finding creative ways to care for him, or teaching other children about compassion and inclusion, Obie has a magic way with people, she said.
“I am a retired special education teacher. His other grandmother is a nurse. His step-grandfather is a doctor. His mother is a psychologist and his father is a teacher,” she said. “He has his own team of health professionals. I think he knew where he was going before he was born and decided to come to us.”
For the first year of Obie's life, local doctors were unable to accurately pinpoint his condition, so his parents flew him to see a specialist in New York, with rates of $1,000 per hour. They were shocked to learn that he would be only the 88th person in the world to be diagnosed with PURA syndrome.
“Obie is two years old and he has inspired more good than most of us do in a lifetime," Michael and Jennifer Broadbent share in the book’s introduction. “He is, quite simply, pure love personified. All the goodness and warmth that you’ve ever seen in someone’s eyes is magnified in Obie’s. It’s an interesting coincidence that the condition is called PURA, as you could not design a purer human than our Obie.”
Now that Obie has the diagnosis, he is still required to make a seven-hour trip from Corner Brook to the Janeway, a children's hospital in St. John’s, for treatment several times a year. Broadbent says that all proceeds from his book will directly support Obie and his parents.
Day Tripping in Nova Scotia, the self-published collection of short stories, has been a big
hit in his family. He added that copies have made their way to England, Calgary, Ottawa and Newfoundland. Obie’s parents, Michael and Jennifer, wrote the introduction to the book and Broadbent uses a special stamp imprint of Obie’s hand that he includes in each copy.
The book outlines places to see all over mainland Nova Scotia — spots in Halifax, the Annapolis Valley, the South Shore and the North Shore — and talks about the history and signature characteristics of each location. Pier 21, Fort Needham, the Edible Art Café, the Village of Canning, the Ovens National Park, Summerville Beach and Tatamagouche are a few of the destinations.
“I refer to it as a travel guide, to special places my wife and I have visited including the Annapolis Valley, South Shore, Halifax, Tatamagouche,” he said. “There are also a variety of romantic stories at the end, because I’m a romantic. “
So far, the books have been selling like hotcakes at the coffee shop in Canning, Joe’s Garage in Kingsport and Shelf Life Used Books in Kentville.
“He is a beautiful baby boy. His eyes look deep and touch your soul.” Terry Broadbent
Three-year-old Obie Broadbent has touched a lot of hearts, including his great-uncle Terry Broadbent’s. The Corner Brook toddler was born with a rare genetic condition. Recently, Terry Broadbent wrote a new book, with all proceeds going to Obie and his family.
Terry Broadbent holds his new book, "Day Tripping in Main Land Nova Scotia."