A perfectly happy life has been put on hold by a mysterious, debilitating disease that has left doctors here and overseas searching for a diagnosis for more than a year. It’s a “one in a zillion” nightmare, and this couple’s reality.
Fernando Rezende Silveira, 44, and Fernanda De Almeida Santos Cordeiro, 42, are birds of a feather. They fell in love on a salsa dance floor in Brazil 20 years ago and later moved to the Northern Beaches, where they now own an apartment in Brookvale and a dog named after the Latin art form that brought them together.
These days the dancing has stopped as has many of Fernando’s motor skills. Fifteen months ago he began losing vision and mobility, struggling to swallow and showing signs of cognitive decline, and then his symptoms suddenly escalated.
“[Doctors] did all the tests, but nothing, [then in] April this year, when we were having dinner in Freshwater one day, and in the middle of dinner, I couldn’t understand a single word of what he said,” Fernanda said.
She rushed him to hospital, believing he was having a stroke, but the results have since baffled everyone, medical experts included.
“Apparently he’s very very special. He is one in a zillion. [Doctors] are very invested in his case, precisely because it’s so rare.”
When we met them in the Beachside Rehabilitation Unit at Mona Vale Hospital, Fernando was almost entirely reliant on his wheelchair. The couple had just transferred from their fifth admission at Northern Beaches Hospital, where he spent three weeks being treated for seronegative autoimmune encephalitis.
However, Fernanda said this was only a provisional diagnosis. Several neurologists have called the case extremely complex, with different symptoms pointing in different directions, none of them textbook, Fernanda explained.
She said treatment was stopped after Fernando failed to respond, which has sent the couple back to square. They now await results from samples sent to the US. For now, those results are their last hope. If these results don’t come back with any further answers, it is not clear what comes next.
“It’s really hard to deal with the reality of it, and whenever I get myself thinking about all the stuff that could be, what the outcome of all of it is, it’s quite scary,” Fernando said, his condition making his speech difficult to understand.
“I try to make that to distract myself just so that I can live, live more in peace.”
Adjusting to a new life
As they wait for a new diagnosis, both hoping for and dreading the results, the couple face other pressures: the cost and the process of making their home accessible.
Before falling ill, Fernando had worked as an accountant at the same firm for 12 years. He can no longer work, and Fernanda left her job in business development to become his full-time carer.
“It’s been amazing having her supporting me, all the service she’s doing, raising funds and contacting people, she’s amazing,” Fernando said.
“And he has been super strong, super super super strong, very positive,” Fernanda added.
“He’s always smiling, making jokes. Just yesterday he stole a painting [from] my friend here and said he had painted it, and I was like, ‘Oh my God’, and it was hers. So, despite all the difficulties, all the limitations, all the challenges, he’s in good spirits.”
Their commitment to each other and their positivity are admirable, but that can’t cover the bills. The couple’s emergency fund is dwindling as they pay for overseas testing and adaptations to their lives.
One expense is a new wheelchair from the US that allows assisted walking. Although Fernando’s body has deteriorated drastically, he can still use his legs and feet, and keeping them active may help him hold on to that ability.
Another is a stair lift for their apartment building. They live on the ground floor, but there are still more than 20 steps between Fernando and his front door. Their GoFundMe has raised almost $50,000. They still need more, but money isn’t the biggest hurdle, they say that getting strata approval for the accessibility work is.
“There is a very bureaucratic, difficult process to get installed with different certifications needed from different professionals. They are very expensive, and it needs to be approved by the strata as well, which is another obstacle that we are facing,” Fernanda said.
“So I’m desperately asking everyone that I can for help to navigate the process.”
Dance while you can
Before Fernando and Fernanda’s lives were turned upside down, they were a very adventurous couple. You would often find them surfing, walking their dog Salsa or travelling the world.
For now, that life remains a bittersweet memory.
“Fernando was super healthy, very very healthy, a very active sports guy, had a great diet, and out of nowhere, everything changed so quickly.”
“I’ve learned that the most cliche thing, enjoy your life as if it was the last day of your life, is true, things can change like that,” she said.
“Fernando was super healthy, very very healthy, a very active sports guy, had a great diet, and out of nowhere, everything changed so quickly. So it’s quite a thing to remember. Live your days as if it was the last one because it is real that things can change very quickly.”
But they are far from giving up. Fernanda vows to leave no stone unturned and no avenue unexplored until Fernando has a clear diagnosis, and treatment.
“I keep on dreaming about the places that I want to travel to, and places that I want to surf,” Fernando said.
“Dreaming of places I want to go, thinking, I want to be free from this.”
You can donate to Fernando and Fernanda’s GoFundMe here.
If you can help with the couple’s strata issues, or know someone who can, get in touch and we’ll pass it on.
