PACC is hosting a benefit Friday
Katie Landeck
News Staff Writer
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A fundraiser will be held this Friday at the PACC to benefit 9-year-old Nora Montville, who is fighting Batten disease. |
Instead of play dates, she has hospital visits.
Camping trips and going out for ice cream are reserved for the plot lines of the movies with which she fills her days.
And while she loves peoples, she communicates with few words and a lot of eye responses, says her mother, Jessica.
Nora is one of seven children in the state battling Batten disease, an inherited nervous system disorder that takes root during early childhood, according to the National Institute of Health.
The disease comes with blindness, seizures and loss of the use of limbs, all of which Nora must endure.
“There are a lot of can’ts, but she’s here and that’s all I care about,” said Ms. Montville, who has three other children.
“The disease is very active, but it’s currently under strong control of medication and therapies.”
Caring for Nora, though, is expensive and comes with a lot of needs that insurance companies won’t cover, Ms. Montville said.
“Though insurance pays for prescriptions, doctors visits and equipment, you can’t get all the necessities or things for enjoyment,” Ms. Montville said.
“You have to pick — new wheelchair or new stroller— and there are a lot of out-of-pocket expenses.”
Which is why a benefit dinner will be held at the Polish American Citizens Club in Gardner on Friday from 6 p.m. until midnight.
The event — a buffet with both hot and cold desserts — will feature a performance from the band Dazed Till Dawn, as well as a visit from Wally the Green Monster from the Boston Red Sox.
There will also be face painting, a coloring contest and raffles.
“Nora hasn’t had a fundraiser in awhile and things are getting hard,” said Ms. Montville, who thanked the sponsors and people who helped coordinate the dinner.
“There has been a lot of support.”
Nora was diagnosed with her disease in 2008.
The prognosis changed everything for the family as it worked to deal with a situation completely out of its control.
“I just keep going and try to make Nora happy,” said Ms. Montville.
“My son, Thomas, is very upset and tries to remember what she was like before she was sick.
Alicia is scared.
Marcus, the little one, is very aware and concerned.
I think the rest of the family is frightened.”
How Nora does changes from day to day.
For now, she still has a basic understanding of what is going on around her and loves stories and music.
There is no known cure for the disorder, but Ms. Montville is determined to keep fighting to save her daughter.
Tickets for the dinner are $10, children under 12 are free.
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