Kaydence Hindes squeals with delight as she throws a purple ball back and forth with her mom, Jessica, who is all smiles as she plays with her eight-year-old daughter, who is anything but ordinary.
With a soul-filling belly laugh and a grin to match, Kaydence expresses a pure joy that reminds her mother of the simple things in life that might otherwise be taken for granted. And even though Kaydence can’t tell you how she feels, she shows it.
It’s a beauty the Cochrane family has found as they explore day-to-day life with their Grade 2 Glenbow Elementary School daughter, who was finally diagnosed with an extremely rare disease last year – Beta-propeller Protein-associated Neurodegeneration or BPAN, which is a variation of Neurodegeneration with brain iron accumulation (NIBIA) that causes severe childhood delays, seizures and adult onset mobility issues including dystonia and parkinsonism once regression typically hits in early adolescence or adulthood.
“It was a relief in a sense but at the same time it opens up a whole can of worms – how do we deal with this? How do we treat this?” explained Jessica, who had been trying to get to the bottom of her daughter’s condition since she noticed Kaydence beginning to regress by nine months of age.
“It was completely random ... the doctors told me I had a better chance of winning the lottery.”
It’s a progressive, genetic disease and there is no cure for “BPAN warriors” (as they are fondly known as), with life expectancy ranging from only a few years of age to BPAN warriors living into their 30s. Much of what is known about NBIA genetic disorders has been credited to Dr. Susan Hayflick and her team at the Oregon Health and Science University.
While the condition is genetic, neither parent carries the gene and the chances of them having another child with BPAN is extremely low. Studies have shown the condition is a new gene mutation that happens in the sperm or egg or occurs shortly after fertilization.
According to nbiacure.org, there are only 118 confirmed cases of BPAN in the world and a few hundred total NBIA diagnoses. As is often the case with rare illnesses, there is no government funding for BPAN and the Hindes family wants to create awareness and fundraise for BPAN research, with the hope that someday treatment will not simply be symptomatic.
“She just brings out the best in you – and anybody she meets,” said Jessica, on the heels of feeding dinner to Kaydence – a strict diet to accommodate her inability to move liquid from the front to back of her mouth, as well as her chances of choking on food most would eat without a care.
Kaydence is almost entirely reliant on her parents for everything, as she suffers from severe developmental delays and intellectual disability. Her mobility is compromised and she gets around by crawling, the use of a walker or a wheelchair. She has trouble sleeping and usually only sleeps around three hours at a time, which worsens when she gets sick – which is often.
“She sees the world the way we want people to see it. To me, it’s such a beautiful thing,” explains Jessica, who is joined by her two other children – Isabella, 6, and Hudson, 4, as well as her husband, Will.
“For me, it’s about bringing awareness to it. People don’t realize the challenges people with children have to go through.”
While many parents groan about hauling their kids to the grocery store, there is another added layer of challenge for Jessica – who must choreograph pushing her daughter in her wheelchair with one hand while pulling a grocery cart with the other.
While Jessica and Will tag team errands and trips to the store so Kaydence can remain at home, Jessica is hopeful that at least one Cochrane grocery store will further explore investing in a Caroline’s Cart – one for people with special needs, where a forward-facing seat is in place of the standard grocery cart seat that a purse or infant is often placed in.
“I’m really ticked about it,” said Shirley Reed, Kaydence’s aid at Glenbow and a longtime advocate for children with special needs who has brought the cart issue to the attention of Cochrane’s grocery stores but has yet to be met with action.
The Hindes family has faced many out of pocket expenses for sensory and mobility equipment to provide care for their daughter, as well as medical teams with little knowledge about the rare NBIA diseases.
Reed, wife of town councillor Alex Reed, was one of the big pushers to get sensory equipment at Glenbow Elementary last year, but the feisty mother of five grown children said she will continue to fight for anything she can to make Kaydence’s life the best it can be – while adding to the school’s arsenal of sensory, mobility and play equipment that would enhance life for other children at the school or in town.
“I’ve always wanted to make a difference. I’ve been blessed with five children ... I’ve always want to give back and I’ve been working with children with special needs for 28 years,” said Shirley, who has been Kaydence’s aid for two years. “I like to make a difference and I like to see a difference – and the last two years have been huge for her.”
To Jessica’s knowledge, there are three other families living with NBIA diseases in Alberta. She has found tremendous support and understanding in networking with these other families.
To donate to We CAN for BPAN, visit firstgiving.com/fundraiser/jessica-hindes.
The family is also looking to host a fundraiser in February that will include temporary BPAN Warrior tattoos.
