BY THE NUMBERS

500 Known cases of Niemann-Pick Disease worldwide

100 Known cases of Niemann-Pick Disease in the United States

25 percent Likelihood a child whose parents are both carriers will have Niemann-Pick Disease

FARMINGTON —When Breann Chavez was born, she had an enlarged liver and spleen. Because of this, she had frequent doctor checkups throughout the first year of her life.

But she seemed to be healthy. She learned to crawl and was beginning to walk holding onto people's hands. Then, the progress slowed. Eventually, it stopped.

At 18 months, Breann Chavez was diagnosed with Niemann-Pick Disease, a rare and fatal genetic condition with symptoms similar to Alzheimer's disease.

For the next 18 months, her parents, Lisa and Jami Chavez, had to watch as everything was taken away from her. Her legs became too weak for her to crawl. She lost her ability to sit up. Her body even stopped producing its own blood.
(Photo courtesy of Lisa Chavez) Breann Chavez died of Niemann Pick Disease when she was 3 years old. After her death, her parents and Wines of the San Juan
(Photo courtesy of Lisa Chavez) Breann Chavez died of Niemann Pick Disease when she was 3 years old. After her death, her parents and Wines of the San Juan started hosting Ducks for Bucks, a fundraiser to help families whose children have been diagnosed with Niemann Pick Disease. (The Daily Times)
But by the time they realized it, Breann only had half of the blood she needed.

Eventually, it was that lack of blood that took 3-year-old Breann's life on June 8, 2006.

Shortly after the toddler died, the family's friend and neighbor, Alex Arnold, approached Lisa Chavez and suggested they start a fundraiser in Breann's memory. They wanted to raise money for families whose children have been diagnosed with Niemann-Pick Disease.

Alex Arnold also happens to be a member of the family that owns Wines of the San Juan.

In 2007, a year after Breann's death, Wines of the San Juan hosted the first Ducks for Bucks fundraiser.

Lisa Chavez said no one expected it to become as big of a success as it did. Year after year, the fundraiser has grown, each year adding a new event.

This year, Ducks for Bucks will take place from noon to 5 p.m. on Saturday at Wines of the San Juan. New this year will be a “Fast Draw” competition involving guns with rubber bullets. Participants can challenge others to a dual to see who can draw the fastest.

There are a variety of events at Ducks for Bucks, including carnival-type games like ring tosses. Tickets cost about 25 cents each.
IF YOU GO

What: Ducks for Bucks

When: Noon to 5 p.m. Saturday

Where: Wines of the San Juan, 233 New Mexico Highway 511, Turley

More info: DucksforBucks.org or call 505-632-7649

Arnold said she loves to watch the children purchase tickets. They will pay $5 and get a long strip of tickets.

“It's so fun to see their little faces light up,” Arnold said.

The name Ducks for Bucks comes from the featured event, a rubber duck race.

Breann loved animals. She had a pet cat and would watch ducks on the pond near the Chavez's house.

“She loved to be around her ducks,” Lisa Chavez said.

During the duck race, people can purchase the duck of their choice from a variety of available rubber ducks. Then that duck is placed into the water, and the fastest one wins $1,000. Even people who are unable to make the Ducks for Bucks event can purchase ducks for the race on the Ducks for Bucks website, DucksforBucks.org. The owner of the winning duck does not have to be present to win.

Lisa Chavez said her family was lucky. Breann's doctor had recently attended a conference where there was a presentation about Niemann-Pick Disease. He recognized the symptoms early on in Breann.

Many families don't have that luck and spend the majority of their time chasing after symptoms. By the time the child is diagnosed, the parents could already have had other children. Niemann-Pick Disease requires that both parents be carriers of the gene, so each child those parents have has a one in four chance of having the disease.

In addition to raising money for affected families, Ducks for Bucks aims to raise awareness so that, hopefully, one day children can be diagnosed earlier with Niemann-Pick Disease.

“It's an overwhelming diagnosis,” Lisa Chavez said. “To know not only you are going to lose your child, you're going to watch your child deteriorate in front of you.”

The money raised during Ducks for Bucks helps families pay for things insurance often doesn't cover — such as travel to visit specialists and wheelchairs that support the child's head.

Lisa Chavez said the event has helped her family keep Breann's spirit alive. And the toddler's short life has gone on to help the families in ways Lisa Chavez could never have imagined.

Before Breann died, Arnold and her children often visited and her children became friends with Breann.

“They all just adored Breann,” Arnold said.
(Daily Times file photo) Rubber ducks float down the Turly-Manzanares ditch during the Dainty Duck Dash in 2012.
(Daily Times file photo) Rubber ducks float down the Turly-Manzanares ditch during the Dainty Duck Dash in 2012. (The Daily Times)


During a Fourth of July celebration one year, the Chavez and Arnold families attended a celebration at a neighbor's house. Arnold said the neighbor had a small patch of “squishy green grass.” Growing up in New Mexico, Breann hadn't had a lot of experiences with lawns.

Arnold took Breann out onto the grass and the two of them danced barefoot together while Breann giggled.

Arnold said that is her favorite memory of Breann.

Hannah Grover covers arts and religion for the Farmington Daily Times. She can be reached at 505-564-4652 and hgrover@daily-times.com. Follow her on twitter @hmgrover.