Sydney's Song: Family raising money and awareness for rare genetic disease

ByLaura Taglialavore KTRK logo
Saturday, July 20, 2019
Family on mission to raise awareness of rare disease
Family on mission to raise awareness of rare disease

A 5-year-old girl from Jersey Village is battling one of the rarest genetic diseases in the world.

Sydney Denton was diagnosed with BPAN, or beta-propeller protein assisted neurodegeneration, as a toddler.

"When she was diagnosed, there were less than 100 people in the world who had BPAN," said Sydney's mother, Amber Denton. "Now there are about 250 confirmed cases of BPAN across the world."

BPAN causes neurological delays and seizures in children. Currently, there is no treatment or cure.

"Usually in childhood, they have little to no speech," said Denton. "Many of them don't walk at all. Sydney is one of the few that do."

As children with BPAN grow older, they will eventually experience a cognitive decline.

"Whenever they reach adulthood, around 25 to 30, they will start a period of regression," said Denton. "Their language will start to go. Their ability to walk will start to diminish. Basically the Parkinsonism and the dementia part of BPAN will set in."

Three times a week, Sydney comes to Open Door Pediatric Therapy in northwest Houston for treatment.

"She gets occupational therapy, physical therapy and speech therapy," said Amber Humphrey, co-owner of Open Door Pediatric Therapy. "We've been working on increasing her communication through an iPad technology, which helps get her basic wants and needs out."

Since her diagnosis, Sydney's mother has started an organization called Sydney's Song to benefit the NBIA (Neurodegeneration Brain Iron Accumulation) Disorders Association, which supports BPAN research.

"We created the Sydney's Song charity," said Denton. "I knew that I had to do something. I couldn't just sit back and be helpless. I named it Sydney's Song because that's her favorite thing to do, is to sing."

Sydney's Song has now raised about $70,000 for the NBIA Disorders Association.

"We hold annual big fundraisers, have silent auctions," said Denton. "Kendra Scott and Tiff's Treats, they've been big supporters of us. Since we started Sydney's Song, we were very surprised to see the general outpouring of love and willingness to help from the Houston community."

Sydney is also the star of a children's book, titled Sydney's Song, sold on Amazon.

"By creating the Sydney's Song book, I really wanted to show that Sydney was just like everyone else," said Denton. "Even though she can't speak to you, she can communicate in a way that she knows, and that's through singing her favorite songs."

Sydney's family is hopeful that as genetic testing becomes more advanced and awareness of BPAN grows, a treatment will one day become available.

"I know that there will be," said Denton. "It may not be in my daughter's lifetime, but I know that everything that I'm doing right now is going to benefit our community in one way or another."

For more information on Sydney's Song, click here.