CRYSTAL FALLS—Two families are holding a fundraising event to focus attention on genetic disorders.
“March is National Trisomy Awareness month, so we thought it would be a great time to get together and discuss these illnesses,” co organizer Gina Anderson said.
The Andersons have teamed with Cathy and John Faccin to sponsor a fundraiser for Noah’s Never Ending Rainbow, a charity dedicated to helping families affected by Trisomy disorders.
Trisomy is a series of genetic disorders affecting human chromosomes by attaching a third arm to a normal chromosome pair. The most common Trisomy is Down’s syndrome, which affects one in every 481 children born in the United States.
Taylor Anderson, 12, has Trisomy 8, Warkany syndrome. “It’s one of the rarest Trisomies,” Gina Anderson said. “I’ve only met one other person who has it.”
Among the challenges facing families of a Trisomy disorder patient, medical attention and associated costs are paramount. “Starting in April, Taylor will be going to Ann Arbor for kidney treatment,” his mother said. “We used to go to Children’s Hospital, but the insurance company wanted us to keep Taylor’s care in-state.”
Katie Faccin, 12, has Down’s syndrome. Her mother met Noah’s Never Ending Rainbow Director Dana Tehako-Esser during one of Katie’s hospital stays.
“She is a remarkable woman,” Cathy Faccin said of Tehako-Esser. “She is so full of life and energy.”
Faccin agrees that Noah’s Never Ending Rainbow is valuable for families affected by Trisomy disorders. “One of the first things we realized was how very limited resources are here (for children with Trisomy disorders),” she said. “Dana was wonderful help in guiding us to what is available for Katie.”
The second annual Noah’s Never Ending Rainbow fundraiser is from 4 to 9 p.m. Saturday March 23, at the Crystal Falls Township Hall. The event features hot dogs and sloppy Joes, a bake sale, raffles and silent auctions.