IDAHO FALLS — Avery Brizzee loves nursery rhymes more than the average 7-year-old. Her speech therapist, Matthew Foster, says that any time he needs to help her calm down, he sings nursery rhyme songs to her.
“I’d say she has a dozen nursery rhymes still memorized, and she sings them all the time,” Foster says. “It’s going to be a sad day if and when she loses the ability to sing those songs.”
Little by little, Avery is losing physical and mental abilities because of a rare condition called Sanfilippo Syndrome, which is described as a type of childhood dementia. Unfortunately, it’s a degenerative and fatal disease.
Avery, the daughter of Nigel Brizzee and Jessika Torrans, was diagnosed in 2021. The syndrome has four types, based on the severity of the disease, and Avery has been diagnosed with the most severe type, Foster says.
According to ChildrensHospital.org, symptoms of the disease are not typically present at birth, but begin to develop in early childhood. Because of the degenerative nature of the disease, Foster says Avery is unlikely to survive past adolescence.
“I feel kind of a rush to bring this to the public forefront, because she doesn’t have much time on this earth, from what medicine says,” Foster says. “You never know what God says.”
It’s this urgency to shine a light on Avery’s condition and help her family with medical bills that has motivated Foster, along with Premier Therapy, where he practices, to host the Bravery4Avery 5k/10k this Saturday, Sept. 24, at Snake River Landing at 981 Pier View Drive in Idaho Falls.
Fees are $25 for the 5k and $35 for the 10k and participants can register online.
Foster says that Avery’s family has experienced so many highs and lows over the last couple of years and is always bracing for bad news, but that they’re looking forward to race day as one of the highlights.
“They’re all banding together, and they’re banding around this event,” Foster says. “They say it’s like a family reunion. … The family is definitely on a high with the amount of community support they’re getting.”
The event will also be supported by Bikers Against Bullies in a variety of ways.
“This is so, so cool,” Foster says, “They’re willing to help us in so many different ways. One way is, they’ve allowed me to use their name in this fundraiser so I can extend tax exemptions to people who are doing services for us for the race, so that’s saving us hundreds of dollars. They’re going to be marking the course. We’re going to be making some noise with their loud motorcycles to show Avery and her family support. They’ve been very, very generous.”
Foster has grown close to Avery’s family as her therapist and has been given permission to be her public advocate. He says that, under the circumstances, Avery is actually doing quite well, despite expected backslides in her abilities.
“With language, she’s holding strong,” Foster says. “She’s still verbal. She still has a basic knowledge of language comprehension. She can answer simple questions and follow simple directions.”
Foster says he feels privileged to be allowed to be an advocate for Avery.
“I’m getting more back, as far as life fulfillment goes, than I’m giving,” he says. “I’m just so grateful for the sense of community that I feel and that I’ve seen, being able to direct this race.”
Just a couple of weeks ago, on Sept. 10, Foster and his wife Monica, along with Chris Foster and Julio Mateo, also of Premier Therapy, came together as the Bravery4Avery team in the challenging Lotoja bike race. According to a news release from Bravery4Avery, the 208-mile bike race goes through three states with an elevation gain of 9,500 feet. The team started in Logan, Utah, at 7:02 a.m. and crossed the finish line in Teton Village, Wyoming, at 8:42 p.m.
Next up, Foster plans to qualify for the 2023 Boston Marathon in hopes that he can give Avery and Sanfilippo Syndrome awareness a national platform.
For more information on Bravery4Avery and the upcoming race, visit the organization’s Facebook event page.