Community works to combat rare disease

photo courtesy of the Quandt family

For the third year in a row, the Mountain View Elementary School community is banding together for the cause.

Ty Quandt, 12-year-old Mountain View student, was diagnosed with the rare neuro-degenerative disease, Niemann-Pick, when he was 8 years old.

The fatal disease has no treatment and no cure.

So far, the community at Mountain View has raised more than $16,000 to support research for treatment and a cure for the disease.

This year, the last that Ty will be attending the school, they hope to raise another $10,000.

On April 24, the school will host its third silent auction fundraiser for the National Niemann-Pick Disease Foundation. The event starts at 6:30 p.m. and is open to the public. A suggested donation of $1 will be collected at the door, and community members can bid on any of the approximately 200 silent auction items.

Items up for bid come from donors such as the Oregon and Woodland Park zoos, Southwest Airlines, American Girl, Silverwood Theme Park, Wild Waves and local theaters among many other goods and experiential items.

All proceeds are donated directly to the foundation, which supports research efforts for cures and treatment of the disease.

For Ty, the bright, humorous, fun-loving sixth-grader, Niemann-Pick has taken a toll on his daily life. His memory and brain functions have deteriorated, as well as his communication and fine motor skills.

His mother, Karen, describes the disease as Alzheimer’s for children. Because there is no cure, Ty will likely not live past his teens.

Event organizer Nancy Kreuger has been working closely with Ty as his education aid since he was diagnosed with Niemann-Pick in second grade.

She describes him as a very smart and lovable boy who loves books and hates math.

Working with him has “been very enlightening to me, and has made me appreciate life much more,” she said.

Kreuger said that because this is Ty’s last year at Mountain View, it will most likely be the last fundraiser of this type for the Niemann-Pick Research Foundation.

Ty’s family is planning on carrying on the fundraising tradition by organizing an annual summer golf tournament to continue to support the foundation.

The Surf’s Up Family Dance Night and Silent Auction is from 6:30 to 8:30 p.m. at the Mountain View gym, 3411 119th Ave. E.

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