California child doesn't let illness slow her down

Alison Miller, 12, with her father Sean Miller and sister Desirae, 10. Seated in front is their pet boxer, Goon.

Alison Miller, 12, with her father Sean Miller and sister Desirae, 10. Seated in front is their pet boxer, Goon. Photo by April Arnett.

Alison Miller is a spunky little survivor. She just had brain surgery in August. She's only 12 years old, and she's blind. But you'd never guess it by watching her, or even by knowing her.

"She's smart and she amazes me every day," Alison's father Sean Miller said. "If I had to go through what she has, I'd be mad at the world."

Not Alison. Her last concern is herself, or her illness.

"She thinks too much about everyone else and not enough about herself," her mother Heather DeVille said.

Alison has donated her hair twice to Locks of Love, a non-profit charity that accepts donations of human hair and money to make wigs for needy children with medical conditions that have caused them to lose their hair.

"One time I got 12 inches cut off, and the other time it was 14 inches," Alison said. "It was like a horse tail."

Alison's health initially became a concern when she was just two and starting to walk. Her parents noticed she was bumping into things far too frequently.

"She was running into stuff a lot," Sean said. "So we took her to the eye doctor. We found out she had a brain tumor."

From that point, their lives were never the same.

Alison was eventually diagnosed with Neurofibromatosis, a neurological disease that carries a high risk of tumor formation, particularly in the brain. Alison's tumor is an Optic glioma. It is rare and usually occurs in children before age 20.

Alison was bumping into things because she was losing her vision.

"She is legally blind," Sean said. "She has no peripheral vision. It's like tunnel vision."

Heather added, "She can tell if it's light or dark, and sometimes she sees contrasting color. She knows day and night and if the lights are on or off. That's about it."

Though the brain tumor was benign (non-cancerous), it was inoperable, therefore Alison had to undergo chemotherapy and radiation to shrink it, which was successful.

"After that, we went once a month for a check-up and MRI (Magnetic Resonance Imaging, a test that makes pictures of organs and structures inside the body)," Sean said. "Then over time, it was every three months, then every six months, then once a year."

All the while, Alison, her parents, and her younger sister Desirae, now 10, were adjusting to Alison's vision impairment.

That included Alison learning how to read Braille at a very young age.

Today she is a sixth-grader at California Elementary.

"She does all of her homework in Braille," Sean said. "The school provides it for Alison through the 'No Child Left Behind Act'. Lisa Bieri is her teacher. She's been teaching Alison Braille since before she was in kindergarten."

In August, Alison had to have another surgery.

"She was having bad headaches," Sean said. "We found out the top part of Alison's brain had restricted blood flow due to scarring from the radiation and there was a high risk she could have a stroke."

Heather added, "It's called Moyamoya Syndrome, where certain arteries in the brain are constricted and the blood flow is blocked. So the doctors needed to relieve the pressure, which is what was causing her headaches."

Alison's parents said she was a remarkable patient. "She was at Children's Mercy Hospital for three days and she recovered really well," Sean said. "She couldn't wait to come home. We won't know until her six-month check-up if the surgery was definitely successful, but her doctors are happy with her recovery so far."

Sean added, "We've also been dealing with how the tumor has messed with Alison's growth hormones and pituitary glands. It's been stressful, but we just take it one day at a time. I do a lot of praying, that's for sure. I couldn't imagine life without my daughters. And Desirae helps Alison a lot. She was worried about her having surgery. It's scary that Alison will be a teenager soon. She'll be 13 Friday, Oct. 11."

Heather said, "With Alison's illness, you never know what the future holds. We're hopeful the surgery, which has a success rate of 85 percent, will make things better for her."

For now, Alison is feeling good and she and her sister Desirae, a fourth-grader at California Elementary, are looking forward to Halloween. Alison has already dug into the candy meant for trick-or-treaters, to give to her friends.

The girls are also excited their great-grandma Lucille recently moved to California.

"I like going to grandma Lucille's," Alison said with a big smile.

She said she also likes playing at the park with her sister and dad. "My dad likes to play frisbee golf."

Alison treasures all of the family pets, her collection of stuffed "kitty cats" and her baby dolls. She hopes to add a "bald" Baby Alive to the collection someday. Such a small wish for such a big-hearted little girl.

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