Family of girl with extremely rare disease hopes to pave way for treatment, cure

HOUSTON - A 3-year-old girl named Sydney Denton was diagnosed with a disease so rare that less than 100 people in the world have it.

Sydney has been coming to Open Door Pediatric Therapy for about a year and a half and in January she was diagnosed with beta propeller protein associated neurodegeneration or BPAN, for which there is no treatment or cure.

Sydney has developmental and speech delays. Amber Humphrey, of Open Door Pediatric Therapy, said they’re working to help her with body awareness and sensory integration.

Denton said, “Basically what all that means is that these kids like Sydney will have global delays in childhood. They have little to no language development. They will have trouble meeting milestones and they have intellectual disabilities.”

As Sydney enters her 20s and 30s, the disease will lead to cognitive regression, Parkinson’s disease-like symptoms and dementia. But that possible future doesn't prevent the Denton family from living in the present.

“She loves to play with her brother and she loves being tickled and she loves singing songs. That's her favorite thing,” Amber Denton said. “Our main goal is to let other families know that they're not alone. We can educate doctors and neurologists and other specialists in the area about this disease because if you don't know about it, you wouldn't think to look for it.”

VIDEO: Girl with rare condition sings

As for Sydney, she'll continue to go through therapy while her parents hope that treatments for BPAN will develop.

“We can patiently wait and actively fundraise as hard as we can to get money in the researchers hands because our government does not fund rare disease research,” Denton said.

So how can you help? A fundraising event will be held Saturday at Capitol Bar in Midtown from 1 p.m. to 6 p.m. to benefit Sydney’s Song

 

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