Esquimalt family hosts epic dance party to raise awareness of rare disorder

Published 10:00 am Monday, June 8, 2026

When a cold Mediterranean wave washed over baby Kalliopi Christofi, her older brother Ari cried from the cold.

Kalliopi didn’t flinch.

Days later, the memory would solidify some concerns for her parents, Kelsey and Nico.

The Esquimalt family was living in Cyprus at the time, where Nico hails from.

Kelsey had noticed when Kalliopi, her second baby, didn’t flinch during her first needle poke – but it didn’t raise concern.

Slowly the baby started to not meet her developmental milestones. It wasn’t stark at first, but when Kalliopi couldn’t sit up on her own at nine months, the couple did a developmental survey.

Their happy, content baby scored zero.

“I had this sudden epiphany that her whole life she had never responded to pain,” Kelsey told the Victoria News. “She wouldn’t respond in a lot of ways she should have in situations.”

Kelsey credits the country they were in for the immediacy of seeing a doctor, and once there, insisted on genetic testing.

A week or two later Kalliopi had blood drawn.

“In Victoria it would have taken one to two years,” Kelsey said.

The Christofi family at a conference in Delaware, where the Esquimalt clan met other families and girls with DDX3X Syndrome. (Courtesy Christofi family)

Three months later the results revealed the rare DDX3X Syndrome, only discovered 12 years ago. A mutation of a gene on the X chromosome, the rare neurological disorder primarily affects females.

“Most doctors who’ve been caring for us haven’t heard of it,” Kelsey said. “We feel really yucky she was born in a time when we did get answers … there are other parents advocating like us for research to be done to come up with different therapies, and cures, for these really sweet girls.”

Fewer than 2,000 people worldwide have been diagnosed with DDX3X Syndrome, but researchers believe it may be responsible for one to three per cent of all intellectual disability in women. There is no government or pharmaceutical funding for rare genetic disorders such as DDX3X – every dollar of research comes from families like the Christofis.

Now living in Esquimalt, Kalliopi is two years old, and Ari is nearing his fifth birthday.

The family is set to host an epic block party on June 13 to bring awareness and raise funds. Fernhill Funk is the first DDX3X Foundation fundraiser in Canada.

The family is confident its friendly, supportive community of Esquimalt will come out for some fun, and support the cause.

Midwife Kelsey and her husband Nico – a global health and medical technology professional – will close their block on Fernhill Road for a family-friendly benefit concert headlined by Vancouver funk band Queer as Funk – the band that played the Christofis’ forest wedding in 2022.

“They just burned the house down at our wedding,” Kelsey said. “They’re a really special band, and part of what they stand for is diversity and acceptance for all people. They’re really wonderful humans.”

And the music must be good, because Ari can’t stop spinning their album.

Tickets are available on Eventbrite for a suggested donation of $30 to $100.

There will be free bike parking and limited vehicle parking.

Visit ddx3xfoundation.app.neoncrm.com/Kalliopi to donate or learn more.

Do you have a story tip? Email: christine.vanreeuwyk@blackpress.ca.

Esquimalt family hosts epic dance party to raise awareness of rare disorder

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