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Watch: 'You feel the guilloitine above your head'... but Bjorn wants to go down with a fight

ALS sufferer says his time is running out

Video: Jonathan Borg

Maria Formosa grips a mug of water tightly as she watches her husband, Bjorn. At the slightest sign of a wheeze, she reaches over and puts it to his lips.

The young couple have been married for just over a year, though they’ve had to forgo the usual honeymoon for a more prosaic reality.

“We’ve barely had time to let the reality of marriage settle in,” Mr Formosa says as he furrows his brow.

The 32-year-old has succeeded in making the Maltese aware of ALS, a degenerative disease with no known cure, in a way that even 2014’s ice bucket challenge videos could not.

He has appeared on national TV, publicly donated €100,000 of his own money to research into the disease and with his wife’s help drummed up the funds to build Dar Bjorn, a care home for people living with ALS and other motor-neuron conditions.

To do all that, he’s had to put his private life on very public display. It’s not something he delights in, he admits.

“If achieving my targets means having to expose myself, then I’ll do it,” he says. “It doesn’t mean I enjoy posting everything I do on Facebook. But if it helps…

“Whatever is needed for the cause, we’ll do it.”

Now, he says, his time is running out.

“Three years ago, I was on my feet. Two years ago I ended up in a wheelchair. Last year I started feeling a shortness of breath. Now,” he sighs, “I can feel my breath running out. This only ends in one way, unfortunately.”

His eyes shift down, towards the ground.

It usually takes around three years for ALS to fully take over. I’m in my third year

“You feel the guilloitine above your head. It usually takes around three years for the disease to fully take over. I’m now in my third year...” he says, trailing off.

Over those three years, he has gotten to know many other people with ALS, and seen many fall “like bowling pins,” as he describes it.

“We lost three patients just last week,” he sighs.

Some of those friendships have been fostered at Dar Bjorn itself. Once a school building, the Qormi block has been turned into a bright, well-equipped care home. Colourful paintings dot the walls, and the hum of lunchtime chatter floats across the large living hall.

Residents at Dar Bjorn receive care from the moment they enter until they breathe their last. They live in rooms equipped with state-of-the-art technology which allows them to perform basic tasks – switching off the lights, turning on the TV, raising the window blinds, even typing – using their eyes.

It’s a far cry from the care options ALS patients had available just 12 months ago.

“We have a resident who spent the past five years lying in bed, barely moving,” Ms Formosa confides. “She was put in a State nursing home and nobody knew what to do with her. Now she’s sitting up… her family can’t believe it.”

READ: Maltese researchers make key finding for ALS 

The foundation she helped her husband set up, ALS Malta, runs the home and bankrolls research into the disease.

Bjorn Formosa: ALS sufferer, crusader, fundraiser, Dar Bjorn founder, newlywed. Photo: Jonathan BorgBjorn Formosa: ALS sufferer, crusader, fundraiser, Dar Bjorn founder, newlywed. Photo: Jonathan Borg

Mr Formosa has a clear idea of who he would like to hand the reins over to once he takes his last breath.

“My wife has been with me every step of the way. So far, she’s the best-qualified candidate. But it’s her decision, I don’t want to force this responsibility onto her. I spent 24 hours a day focused on this cause – I had nothing to lose.”

ALS Malta’s future clearly plays on his mind, though Mr Formosa takes it all philosophically.

“At the end of the day, I did all I could. Whatever happens after that, happens. I don’t have any control over it.”

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