A book for Obie

Fam­ily of boy with rare con­di­tion get­ting help from a rel­a­tive.

The Western Star - - FRONT PAGE - HEATHER KILLEN

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.”

OF­FER­ING SUP­PORT

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

SUB­MIT­TED

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.

SUB­MIT­TED

Terry Broad­bent holds his new book, "Day Trip­ping in Main Land Nova Sco­tia."

Newspapers in English

Newspapers from Canada

© PressReader. All rights reserved.