Ten-year-old Anastazia Scherer has spent weeks hospitalized for neurofibromatosis type 1. Despite the challenges of living with this condition, she has kept her fellow patients in mind by starting a toy drive for children in hospitals.
“Neurofibromatosis affects everybody differently,” her mother Terra, 33, said. “So some people may not know they have it, and some people are [deformed].”
She said the condition can cause tumors all over the body, learning disabilities, capillary spots, which are birthmark-like spots on the skin, and, most commonly, brain tumors. It also can lead to nerve damage and amputations, she said.
Anastazia has a brain tumor that should have stopped growing by the time she was 8, but the Scherers learned recently that it has begun growing again.
The fourth-grader at Indian Head Elementary School asked Principal Toni Melton-Trainor to allow her to conduct the drive. “Actually, I was thrilled,” Melton-Trainor said. “I thought that it was quite touching to me that a child would want to serve others.”
Anastazia spent three weeks last summer at Johns Hopkins Children’s Center in Baltimore for a midaortic bypass on her abdomen.
After surgery, Anastazia received a box of art supplies in the intensive care unit. “Then some of the doctors gave me some stuff, so that’s when I thought I would give them some stuff for the other kids, because they gave me stuff,” Anastazia said.
A donation box was kept by the secretary’s desk in the elementary school’s office lobby.
“The students decorated it and wrapped it up with some paper” and labeled what the cause was for, said Arthur Scherer, Anastazia’s father.
Her sister Ashley, a sophomore at Henry E. Lackey High School, decided she wanted to collect donations at her school, too. In a little more than a week, she collected 350 items.
Donations collected at both schools include coloring books, stuffed animals, Barbie dolls, fleece blankets, crayons and games.
Anastazia was 6 months old when her parents were told she had the disorder. The diagnosis did not come as a shock, because Terra also has the condition.
A 50-50 chance existed with each of Terra’s children that the condition would be passed on. The Scherers also have two sons, Donovan, 13, and Arthur Jr., 12. Neither boy, nor Ashley, 15, has neurofibromatosis type 1.
Ashley has written reports about neurofibromatosis type 1 to educate her classmates and teachers about the condition. In one of her classes, Ashley said, they do community service, and she thought of holding a toy drive for the hospital. The family called it “The Johns Hopkins Toy Drive for Anastazia.”
“I explained what neurofibromatosis was and that it was for my sister, and that over the summer she had her first bypass surgery, and she wanted to help people the way that she was helped,” Ashley said.
Ashley distributed a list of acceptable items for the toy drive to students and teachers. She said the toy drive gave her the opportunity to talk to people she wouldn’t normally have talked to, and she learned that some friends she has had for a while also have neurofibromatosis. Ashley said she has gotten a lot of support from her teachers.
“It turned out much better than any of us had imagined,” Terra Scherer said.
Terra has what is known as a “new mutation,” because she was the first member of her family born with the condition.
There also is a neurofibromatosis type 2, which is more likely to cause blindness and deafness because it affects the entire nervous system, Terra said. She said that one in 3,000 babies is born with type 1, and one in 20,000 is born with type 2.
Terra said that very few doctors know much about either condition, which is why the family travels to a pediatrician at Johns Hopkins.
“It’s hard to find somebody you trust to handle your child,” she said.
Staff assistant Elizabeth Ferguson of the Child Life Department at Johns Hopkins Children’s Center said in an e-mailed statement that the donations will be used for bingo prizes, gifts or “sometimes just a pick-me-up gift to make a child smile.”
“The Child Life Department relies on the generous donations like this one to make a hospital stay better for children,” Ferguson wrote. “The gifts we receive from people and organizations can help a child just be a kid while in the hospital and can be vital in the healing process.”
Terra said there is no treatment or cure for neurofibromatosis type 1, only management.
“What they have come to a conclusion of is the chromosome that [neurofibromatosis type 1] affects is a tumor suppressant, so when that chromosome has been affected, we don’t suppress tumors like people normally do, which makes our bodies grow them initially,” Terra said.
She had several tumors removed several years ago. Anastazia has a tumor on her neck that is not very visible; the tumor in her brain is on the optic nerve and affects her vision.
Anastazia has MRIs every six months to a year and eye exams twice a year. She is examined by a neurologist at least once a year and has regular checkups with her nephrologist, a doctor who specializes in treating kidney problems, and a surgeon.
Terra said Anastazia would like to make the toy drive an annual event. Lackey has expressed interest in doing so.
“Something to help ease the transition. Most kids that go into major surgery have never been through anything like it,” Arthur Scherer said. “[Anastazia] wasn’t happy when she woke up [from surgery last summer].”
Anastazia had midaortic bypass surgery on her abdomen where her kidneys are because the artery had narrowed. She suffered from high blood pressure. Synthetic material was used to bypass the midaorta and create another route for blood to travel to her kidneys, so they would no longer have to overcompensate for the lack of blood flow.
Anastazia still suffers from high blood pressure, but it is more manageable since the surgery.
We’re “just hoping to brighten up some other kids’ days when they’re in the hospital,” Arthur said.