“His smile was ear to ear!” exclaimed Dream Come True dream manager Kristie Perry, as she recalled the November 8 unveiling of Justin Bogdanoff’s new “Boy Cave.” Repainted in warm gold and a rich blue, with the Newtown High School Nighthawks logo dominating one wall, new bedding, cushy Yogi-bo couches on which to lounge in front of a 55-inch flat-screen television, with an Xbox gaming system and home theater system, and a mini-refrigerator, his new room reflected the 12-year-old Newtown boy’s love — the Newtown Nighthawks — and was truly a dream come true.
Justin, the son of Liz and Tod Bogdanoff, was diagnosed with craniopharyngioma, a brain tumor on the pituitary gland, when he was not quite 5 years old. Even after two major surgeries, Justin’s condition is chronic, and has resulted in tunnel vision that cannot be corrected with glasses. He takes several medications to control growth, kidney function, and adrenal function, all of which are controlled by the pituitary gland, said his father.
“The pituitary gland is the master gland of the body,” said Mr Bogdanoff. Because Justin’s pituitary gland was crushed by the growing tumor and removed surgically, he will always need medications to control many body functions.
Only subtle symptoms that did not hint of a serious condition cropped up prior to the day that Justin told her “He could only see half out of one eye,” said Ms Bogdanoff. Since then, the surgeries and medications have meant that Justin must work five times as hard as other children to achieve the same successes.
But you cannot keep a good man down. Not only does Justin succeed academically, with extra work, said his mother, but he has played lacrosse and wrestled for the past two years. “I decided we can’t keep him in a bubble. He has to be a boy,” Ms Bogdanoff said.
The family is proud that Justin keeps an even temperament through it all, and that he has found great joy in playing sports. “The fact that he can catch a lacrosse ball is a miracle,” she said, and she credits lacrosse coach Scott Usher and his teammates for making the sport doable for Justin.
“It’s coaches like this, who come from a positive coaching place, that make Justin feel good and are so positive,” Ms Bogdanoff said. The family is also pleased with the support they have been offered through the Newtown School System, she said. “We are extremely lucky to live here. We have a lot to be grateful for,” Ms Bogdanoff said.
But keeping up with his peers and school can be challenging, and sometimes Justin needs down time.
That is where Dream Come True came into the picture.
Dream Come True of Western Connecticut was founded in 1984 to grant wishes to seriously, chronically, and terminally ill children from Fairfield, Litchfield, and New Haven Counties.
“Our mission is for those children,” said Rosanne Augustine, chairman of the dream committee for Dream Come True of Western Connecticut. “Once we get a referral, it is reviewed by doctors on our board to see if the child qualifies,” she said. Dreams are granted for children between the ages of 4 and 19, from all income levels. Dream Come True of Western Connecticut grants between 20 and 25 dreams each year, Ms Augustine said.
It was Justin’s doctor from Southbury Pediatrics, Susan Beris, MD, who recommended Justin to Dream Come True, said Ms Bogdanoff. Endocrinologist Susan Boulware, MD, of Yale Pediatrics in New Haven, and Robert Lesser, MD, of The Eye Care Group in Waterbury also supported the recommendation.
“We sent out a dream manager to find out what Justin’s dream was,” said Ms Augustine.
“We were really excited,” added Ms Perry, who along with fellow team member Beth Luddy interviewed Justin, “to have someone in our own backyard we could help. And Justin had such a good attitude. He seems to make the most of what he has. He is so positive, so easygoing. We knew it would be a lot of fun to do something for him.”
The Bogdanoffs had not heard of Dream Come True prior to this summer, but the interaction with the nearly all-volunteer organization has been phenomenal, Ms Bogdanoff said. “It’s incredible what these people do,” she said.
Once the family was approved for a dream, Justin and his parents talked about what that might look like. They talked him down from a trip to Bora Bora in the South Pacific — a little too much of a dream for the local organization — to focusing on what he loves best. A room makeover reflecting the colors of his favorite hometown team, and with a sports theme, seemed like a dream he could dwell within for a long, long time.
The room was repainted the end of September in Newtown High School shades of blue and gold, selected by Justin and donated by Rings End Lumber in Bethel.
Painters Brian Terzian & Son, LLC of Bethel donated services, Ms Bogdanoff said. “Not only did they do an amazing job painting, they noticed his door was damaged, took it off, and got him a new one,” she said.
Family schedules and some “dream catching” by the dream volunteers for certain items meant that the final touches had to wait.
A Party To Remember
On Friday afternoon, November 8, the dream team arrived at the Bogdanoff home to make the Dream Come True. The furniture was rearranged, the large Nighthawks decal was attached to the wall, bedding was put on, and the television system hooked up. Inside the Coca-Cola refrigerator, cans of soda cooled, and as soon as the bean bag-like couches were put in place, Justin’s dog, Louie, claimed them for his own.
Senior members of the Newtown Nighthawks Boys’ Lacrosse team arrived and sneaked into the room to greet Justin. Newtown High School Athletic Director Gregg Simon had arranged the meeting with the team members and Justin for the evening.
When Ms Luddy approached Mr Simon for a template of the Nighthawks logo, said Ms Perry, “He wanted ‘in’ on the project.”
With the lacrosse team came a lacrosse warm-up suit in Justin’s size, a high school lacrosse helmet signed by team members, and an away and a home game lacrosse jersey, as well as game day socks. Dream Come True contacted Dan McKee of Dan McKee Designs and Signs, and he donated services to letter Justin’s name across the back of each jersey.
“Those boys came over with their whole hearts,” said Ms Bogdanoff of the NHS lacrosse team members. “They were incredible, and we were very, very impressed by them,” she said.
Then the moment came when Justin was led upstairs. He opened his door to his room. Not only did the entirely new décor leap out at him, so did nearly 30 of his friends, relatives, Dream Come True team members, and the lacrosse players.
“I was very surprised,” Justin said, a smile still stretching across his face three days later. “I didn’t know what to do!”
What to do was have a party. Dream Come True supplied the pizza for everybody, and decorated the house with streamers and balloons. Justin’s friends, of course, enjoyed cold soda from the Coca-Cola mini fridge.
The family gathered in Justin’s room over the weekend for a family movie night, Ms Bogdanoff said, and Justin’s older sister has suddenly found her little brother’s room far more interesting.
The new room is thrilling, said the family, but will be a test of Justin’s will power, as well. The Newtown Middle School seventh grader is not allowed to watch television on school nights, nor is he encouraged to drink soda. “He’s a good kid, though,” his mother said, “so it might be a little torture, but he’ll do fine.”
As a side benefit, Justin has decided to create a flag football fundraiser next year to support Dream Come True of Western Connecticut. In preparing for his bar mitzvah, he had to pick a community service project, and decided that this would be a way to help other children who could benefit from the generosity of the Dream Come True program.
“Now this project, at our home, means something to him,” said Ms Bogdanoff. “Dream Come True gave him something, and now he can give back.”
Dream Come True of Western Connecticut is able to grant wishes through the generosity of volunteers, in-kind donations, and monetary donations. Dream Come True is a 501(3)(c) charitable organization. To support Dream Come True, visit www.dreamcometruect.org, or call 203-790-7333.