Battling disease, Grafton woman inspires family with kindnessA rare genetic disease forced Nicole O’Toole of Grafton, N.D., to spend much of her childhood in and out of hospitals. Rather than dwell on these struggles, she thinks about others, say family. The 18-year-old was born with tuberous sclerosis, a disease that causes non-malignant tumors to grow on the brain, kidneys and skin.
By: Jennifer Johnson, Grand Forks Herald
A rare genetic disease forced Nicole O’Toole of Grafton, N.D., to spend much of her childhood in and out of hospitals. Rather than dwell on these struggles, she thinks about others, say family.
The 18-year-old was born with tuberous sclerosis, a disease that causes non-malignant tumors to grow on the brain, kidneys and skin.
She spent her childhood wracked with seizures that hit several times per day, and the exhaustion forced her to miss school. At one point, she and her mother were making monthly trips to Boston, Minneapolis and Fargo to have the tumors removed from her face.
After O’Toole endured major brain surgery to stop the seizures at age 10, she began to fear doctors, but she was still brave enough to be subjected to neurological testing or to try a new drug or cream, said her aunt Ali Rood.
At the time, Rood was attending UND. She considered pursuing a doctorate in geography out-of-state, but was motivated to stay in Grand Forks after observing O’Toole’s focus on family and realizing how important it is.
“No amount of money or lifestyle would take the place of being around family,” said Rood. “I can say that it’s the best decision I’ve ever made.”
O’Toole’s everyday thoughtfulness impresses her mother Tammie and aunt, who say she truly cares.
“I don’t think she knows she’s even doing it,” said her mother.
After her grandmother recently had major knee surgery, O’Toole stayed with her for three days, making her dinner and tending to her needs. When Rood’s dog died, O’Toole painted a picture of the dog and gave it to her aunt, who hung it above her fireplace.
“I just didn’t want to see my aunt cry and cry,” she said.
‘One day at a time’
A shy woman, O’Toole listened quietly as her mother recently described her latest victories, which included using a face cream that could keep her out of a doctor’s office for the next six months. Otherwise, she was having laser surgery every year, said her mother.
O’Toole, who was sporting bright red nails with intricate white snowflakes, spoke very little about her own accomplishments. Occasionally, a bright smile would bloom on her face, especially when talking about her love of animals.
“I want to work with animals,” she said.
O’Toole takes care of the black and white family cat, Sammy, and wants to groom cats and dogs when she gets older. One of her jobs through the school’s special education department involves grooming, she said.
Maintaining her grades is also important, and working hard makes her happy, she said.
Her mother noted that when she was young, she missed a lot of school and sometimes struggles to keep up. But she has a clear idea of her future.
“I want to get a job and an apartment, and live on my own,” she said.
As she said this, her mother smiled.
“It’s one day at a time for us,” she said.
Call Johnson at (701) 787-6736; (800) 477-6572, ext. 1736; or send e-mail to email@example.com.