IDAHO FALLS - This weekend the community is coming together at a race event to support an 8-year-old girl suffering from childhood dementia.
Avery Brizzee is the namesake for the Bravery for Avery event, a race that’s in its second year. At the age of 6, Avery was diagnosed with a rare form of childhood dementia called Sanfilippo Syndrome.
“At 5 years old she wasn’t where she needed to be as far as motor skills,” Jessika Torrans, Avery’s mother says.
Originally Avery’s parents thought that she had a behavioral disorder and they also had Avery perform an IQ test in an attempt to identify her condition.
“It’s been a long bumpy road because at first we just saw behavioral issues, so we were seeking an ODD or an ADHD diagnosis, and to our surprise, those are just her symptoms that are just within the diagnosis,” Torrans says. “It’s a pretty wild disease … three years ago she could talk into full sentences, but nowadays we’re lucky to get one word.”
Torrans says the progression of the disease means physical digression for Avery. She says the effects of Sanfilippo include brain damage and complete loss of motor skills. unfortunately, this is a terminal illness for her daughter. About 1 in 70,000 children are diagnosed with Sanfilippo syndrome.
“She will eventually stop walking, not being able to talk at all— we’re actually looking into getting her a g-tube soon,” Torrans says.
The Bravery for Avery event is organized by Avery’s speech therapist, Matt Foster with Premier Therapy.
“He really wanted to help out our family. When he met Avery he was with us through the diagnosis process because I had started her in therapy before her diagnosis,” Torrans says. “he was a pretty good shoulder and wanted to help us, and also spread awareness about the disorder.”
Torrans says along with raising awareness for this disease this event is a way to thank the community for all the support it has given her family.
“There’s no words to tell the community how much we appreciate everything,” Torrans says.
The Bravery for Avery 5k/10k starts Saturday morning at 8:50 a.m. at Snake River Landing in Idaho Falls. you can register at the event at 7:30 a.m. Find out more about the race at Active.com.