Toby’s Dream grants wishes to children in Hampton Roads
New nonprofit treats children with chronic illnesses and their families to dream getaways
April 22, 2012|By Prue Salasky, psalasky@dailypress.com | 757-247-4784
Direct link to article: http://articles.dailypress.com/2012-04-22/features/dp-fea-tobys-dream-0422-20120421_1_toby-hampton-roads-fashion-week
“Whatever their dream is, we try to make it happen,” says Joan Steele, executive director of the 2-year-old nonprofit Toby’s Dream Foundation. The wish-granting foundation has already fulfilled dreams for 70 children with chronic medical conditions and their families from Hampton Roads and the Eastern Shore.
“We like to make the dream even bigger than they imagined,” says Steele. If the dream is a visit to an NBA game, then they’ll work to create a meeting with a star player; if the chosen destination is Disney World, then the child and family get the red-carpet treatment of staying at the Give Kids the World Village.
One recipient asked to meet country songster Taylor Swift; the star came to the girl’s home and played guitar for two hours. Kamren Heutel, 11, wanted to see a Tennessee Titans game — he also got to spend time in the locker room, at a practice, and was given a keepsake helmet by his hero, kick returner Marc Mariani.
Two “dream-makers,” specially trained volunteers, visit children who’ve been referred and deemed medically qualified, to find out their dream. Though families and siblings in the household are included, the volunteers are careful to determine the child’s dream and not the family’s. The average cost of a dream is $5,500. “The goal is for them to have no out-of-pocket expenses,” says Steele.
New York City fashion
Keilah Hieb, 13, and her family — mother Michelle, father Mike, and brothers Justus, 11, Shepherd, 9, and Asher,7 — will be heading to New York City as soon as Toby’s Dream can complete the arrangements.
Keilah, a self-assured teen with a pixie haircut and engaging demeanor, spent last year battling non-Hodgkin’s lymphoma. She aspires to be a fashion designer one day, so she requested a visit to a city with a thriving fashion industry. Ideally she would visit New York City during fall Fashion Week, but the Fort Eustis family is under orders for Hawaii, so their visit will have to be earlier. To compensate, Toby’s Dream has a surprise in store for Keilah that it’s not sharing in advance.
At home, Keilah perches on the sofa, with books of her colorful crayon designs and pencil drawings of “modest clothes for girls and teens” spread on the coffee table in her family’s living room. Delicate, precise carefully drawn figures dance across the pages of her notebooks, her inspiration for their clothes taken from TV shows, her grandmother’s magazines, and shopping. “Mostly I look around at people, I like comfy, soft fabrics,” she says. She’s wearing a Cardinals sweat shirt and sporting blue nail polish, as is the family’s boxer, Scout.
Michelle, who home-schools the children, compliments her daughter’s eye for color. “When she picks out outfits for me, I always get compliments,” she says.
Since her recovery, Keilah has resumed multiple extra-curricular activities. She’s a cheerleader, and with her brothers she does Taekwondo and plays piano — “but not as well as Shepherd,” she says of the latter pursuits. “He’s our Renaissance man.” says Michelle, adding that Keilah’sthree brothers all dote on her. “When she was sick they picked up her chores without complaint,” she says. Asher, the youngest, recalls how the family had to missHampton’s Blackbeard Pirate Festival because of Keilah’sillness; Justus immediately chimes in that they got to watch “Pirates of the Caribbean” movies instead.
For three months in 2011, starting in April, Keilah’s illness went undiagnosed because of her unusual symptoms. “My stomach just really hurt,” she says. “There was lots of cramping and pain.” Initially, the family dismissed it as “woman stuff.” Then, doctors thought perhaps it was a virus; one attributed it to stress from her dad’s departure for a 1-year deployment to Afghanistan. All tests consistently came back negative. Meanwhile, she was in a lot of pain and stayed home, lying on the couch most of the time.
Finally, in July, a CT scan at Naval Medical Center, Portsmouth, showed her intestines telescoping in on themselves from intussusception, an unusual diagnosis for a girl her age. Keilah was hospitalized immediately and had emergency surgery to remove 6 inches of her intestines. The family had anticipated a digestive disorder, but follow-up tests on a swollen lymph node indicated cancer. For Mike, recalled from deployment, the news came as “a punch in the gut feeling.”
“It’s hard to find a gentle way to tell people you have cancer,” says Keilah, matter of factly.
The teen remembers little about that time. “It’s interesting how your brain can block out things,” she says. Her week-long hospital stay was followed by seven weeks of chemotherapy. Her shoulder-length hair started falling out — “it always ended up in my dad’s food,” she recalls, laughing. Her mom started calling her “Fuzzy Wuzzy” after the nursery rhyme bear and shaved her head. “That’s when we found out that she and Asher really favor each other,” Michelle says.
Keilah and her parents are full of praise for the oncology department at the naval hospital where she goes for 3-month check-ups. It has now been 6 months since she completed her treatment. She feels good, she says, and is recovering her strength and putting on weight.
“I’m very excited about the trip,” she says with a radiant smile.
“Give Kids the World” — Disney style
Katelyn “Katie” Ward, 10, runs to her room and returns with some of the goodies she received from Toby’s Dream Foundation and the family trip it sponsored to Disney World two years ago. She still has the princess dress and shoes, the wand, the hair accessories, and the DVDs that captured the highlights of their adventure.
The James City County family — Katie, her brother Tyler, now 61/2, and parents Keenan and Janet — stayed in a self-contained villa in a section of Disney World reserved for children sponsored by nonprofits. The trip started with a stretch limo ride to the airport and the special treatment lasted the entire week of their stay — from unlimited ice cream to meeting the Disney characters, horseback-riding, pillow-making, daily gifts, and having a private makeup session — and it continues now with Toby’s Dream special events, such as theater visits and ball games.
Katie was born with dystrophic epidermolysis bullosa, a rare skin disorder that she inherited from her mother. At birth she had no skin on her foreleg; as a baby her skin tore when she was picked up. The disorder affects all the skin layers, often just peeling off. She suffers from spontaneous blistering under her arms. Dressed in long sleeves, Katie’s wounds are not immediately apparent, but when she pulls up a pant leg it reveals a mass of bandages, particularly around her knees. There’s no cure and the wounds are treated topically with specially-ordered creams and bandages — she can’t use adhesives or Band-Aids. When they fail to heal and there’s a danger of infection, then antibiotics are in order.
Her dad is out waiting for a specially formulated medication that only one pharmacy in the region can supply it. She has a new palate expander, and they anticipate that it will cause more blisters.
“As many as have it, there are different types,” says Janet of the rare disease. “The most dangerous thing now is infection and antibiotic resistance.” The difficulties are constant: Katie couldn’t crawl as a baby because of the wound-causing friction; when she had her tonsils out, the doctor couldn’t cauterize the wound leading to the danger of hemorrhage; and Virginia’s heat and humidity exacerbate the condition.
Katie, cheerful and outgoing, appears unfazed by all the problems. A fourth-grader at James River Elementary, she wears her clothes a little large to protect her and uses a rolling backpack, but she also plays soccer and climbs on a padded rock wall. She can’t, however, climb on the school’s monkey bars. Last year she went to 4-H camp for the first time — and returned with strep, staph and bacterial infections from taking a dip in the James River.
The Wards haven’t met anyone locally with the same condition, but they participate in an online support group and the Debra Foundation (www.debra.org), which raises funds for research.
The trip remains a highlight. “By the end of the week she was covered in bandages,” says Janet, a measure of the carefree fun Katie was having. “Nobody talked about doctors or insurance. It was a beautiful week.”
Katie summarizes the experience as “Better than the best — it was too amazing.”
Toby’s Dream grants wishes to children in Hampton Roads
Toby’s Dream Foundation
The nonprofit foundation “creates dream experiences for children facing an uncertain tomorrow.” It serves children, ages 3 to 18, who meet certain medical qualifications, who live in Greater Hampton Roads and the Eastern Shore of Virginia and are not involved with other wish-granting organizations. Families are always included, with each dream costing approximately $5,500.
The foundation is named for Toby Vaught, a young man from Hampton Roads, who died age 29. The foundation works closely with Children’s Hospital of the King’s Daughters, Edmarc Hospice for Children and the Portsmouth Naval Medical Center.
For information, contact Joan Steele, executive director, at 757-493-3754, joan@tobysdream.org; http://www.tobysdream.org. Donations and volunteers welcomed.
