STAFFORD, Va. (AP) — Elliott Domaleski was watching “The Muppet Christmas Carol” when she saw Tiny Tim’s crutch, propped up in the corner by itself.
Most 5-year-olds probably wouldn’t have given the image a second thought.
But Elliott’s young life has changed dramatically in the last two months, since sudden bruises and a rash indicated severe bone marrow failure. The cartoon stirred something inside the little girl with big blue eyes.
“I hope I don’t die young,” she said.
Her mother, Nora, caught her breath as she recalled the memory. She did that often as she tried to talk, without crying, about what’s happened to her only child.
“She’s 5 and she already understands mortality,” the mom said.
That’s one of the many bitter pills Nora and Greg Domaleski of Stafford County have had to swallow since early November when they learned their dinosaur-loving daughter has aplastic anemia. The rare condition occurs when the body stops producing new blood cells.
Elliott, or “Ellisaurus” as she’s sometimes called, doesn’t have enough red blood cells to carry oxygen from her lungs or enough platelets to stop bleeding when it occurs. Her neutrophils, the most common type of white blood cells and the body’s first line of defense against infection, “are at zero,” her mom said, meaning she’s at high risk at catching anything.
Recently, a fever sent her to the hospital for four days.
The sudden upheaval of the family’s life and the threat the condition poses — perfectly illustrated by a crutch that’s no longer needed — has been difficult to process.
“Overnight, she went from being what we thought was a very normal, healthy kid to being seriously ill,” her mother said.
“Almost like she was made of glass,” her father added.
The kindergartner had to stop going to school in early November because of the risk of exposure to respiratory germs. She’s paused classes in taekwondo and Scouts, can’t have play dates with neighborhood friends or even eat sushi — which she loves — due to the possible risk of foodborne bacteria.
Because her condition is so severe, she’ll probably need a bone marrow transplant by the end of March. Neither parent is a perfect match nor is anyone else on the Be The Match Registry, operated by the National Marrow Donor Program.
Family friend Cassy Bindis is scheduling local events where people can register as potential donors. Be The Match will have a table at KidFest, at the Fredericksburg Expo and Conference Center, Feb. 11–12.
But because the clock is ticking toward a transplant, Elliott’s mother hopes people join the registry as soon as possible.
“The sooner the better would be best because it takes time, and that’s something we really don’t have a lot of,” she said.
Those interested — and between the ages of 18 and 40 — can start the process by registering and answering questions about their medical history. If eligible, they’ll be sent a kit to swab their cheek and have results processed. Registration is at My.bethematch.org/Ellisaurus or by texting Ellisaurus to 61474.
‘Really bonded us’
Nora has lived with her parents, Michael and Anne Tolbert, since Elliott was born.
“Long story short,” Nora said, she and Greg, “kind of went our separate ways when Elliott was born then reconnected back over the summer.”
They also got married. Elliott’s on her father’s insurance plan, which proved even more helpful after Nora had to quit her job as an office manager to provide full-time care for her daughter.
Greg works for an asphalt company, but he’s also a Coast Guard reservist and is deployed to Guantanamo Bay Naval Base in Cuba. He’s been there four months, and before he left, the couple talked about him taking a more active role in parenting.
Then, Elliott and her mother were at Children’s Hospital in Washington, dealing with treatments and transfusions. When nurses entered the room in the middle of the night, asking the mom to sign for blood products and explaining the various risks, Nora started calling Greg for advice.
“Going into a crisis situation just really bonded us and brought us together,” she said.
He took emergency leave when Elliott had a therapy designed to boost her immune system.
“Just having him here, it felt right,” Nora said.
When she agreed to be interviewed, Nora picked a time when she could call her husband during his lunch break. As she sat outside on the porch with a reporter, her husband’s voice came over the phone, set on speaker.
Meanwhile, Elliott showed her herd of plastic dinosaurs to a photographer, explaining the names and habits of each. She was aghast when a reporter mistakenly referred to Stuart, a 5-foot replica, as a puny brontosaurus when it actually was a dreadnoughtus, among the biggest dinosaurs that ever lived.
Her parents laughed at how easy it is for her to make new friends. She doesn’t get that from either of them.
“She’s a little social butterfly, talking to anybody,” her father said. “Nora and I aren’t that social, it takes us a little while longer to warm up and talk.”
They’ve been amazed by the way Elliott “can still go like the Energizer bunny,” he said, although she sometimes gets tired on walks.
Most people wouldn’t know she has a serious illness, if not for the fact she doesn’t leave the house and is masked around others, even outside, to ward off germs.
Then, there’s the times when she wakes up, sneezing blood, or has blood coming from her gums.
Not ‘a pile of sad’
Elliott gets transfusions of blood once a week, and platelets, twice a week. For the platelet transfusions, she has to sit in a chair for about three hours, and her mother brings lots of coloring books, small dinosaurs and reading material.
Nora fears the immunosuppressive therapy, or IST, that Elliott got in late December isn’t working, as Elliott seems to be getting worse. A platelet transfusion on Monday used to keep nosebleeds at bay until the next transfusion on Thursday or Friday, but recently, Elliott had them by Wednesday.
Still, she’s chipper and ready to chatter about her friendly dinosaurs.
“I’m just astounded that she’s not turned into a pile of sad,” said family friend Bindis. “Most adults don’t handle it like that.”
Bindis believes Elliott approaches her illness the same way she does everything else, that it’s a new day and a chance for new experiences. She knows part of that is because “she’s still enjoying being a child” but, like Elliott’s parents, recognizes that the girl seems to know “how her life is at risk.”
“I’m just trying to be as helpful and as strong and as brave,” Bindis said, “as I feel like Elliott is being.”