Last summer, 28-year old Bjorn Formosa joined millions of people all over the world in taking part in the Ice Bucket Challenge, raising awareness for motor neurone disease (ALS), a debilitating degenerative disease for which there is no known cure.
Now, just a year later, he is fighting the disease himself – and coming to terms with the knowledge that he may have just three years to live.
“The first time I went to the neurologist I realised it was something bad,” says Mr Formosa.
“The first few weeks were terrible. I couldn’t imagine my life just stopping in a few years time. But then I realised it was useless to worry.
“I was already going to have a messed-up physical state, there was no point having a bad psychological state as well. I’ll try to live the time I have left as best I can, and then when the time comes, it comes.”
Amyotrophic lateral sclerosis (ALS), or motor neurone disease, is a progressive neuro-degenerative disease that affects nerve cells in the brain and the spinal cord.
As the disease progresses, the body’s motor neurones stop sending signals to the muscles until the muscles start to die, leading to partial paralysis and eventually a full paraplegic state.
There is currently no cure or effective treatment for ALS and most patients live just two to five years after their first signs of disease, while about 10 per cent survive 10 years or more.
The condition is relatively rare, with some 15 sufferers in Malta. For someone under 30, the odds are close to one in a million.
Mr Formosa was diagnosed with the disease just a few weeks ago. Having lived a very active lifestyle, he first realised something was wrong when he began struggling while playing football with friends and lifting weights at the gym.
A few weeks on, he says, climbing stairs has already become “a mission” and even typing at a computer for any length of time is challenging.
“At the moment, if you see me, you won’t notice much of a difference, but the regress is relentless. Every month you lose something else, and once it goes, it can’t be recovered.”
The disease has also taken its toll on his relationships. Before his diagnosis, Mr Formosa was living with his girlfriend, but he says things grew difficult due to his condition, and the two have now gone their separate ways.
“With my prognosis, it doesn’t make sense to put someone else through it with me. You can’t make plans when you know you only have a couple of years.”
Mr Formosa speaks calmly, almost stoically, about his future, and says he feels no anger about his situation, although he admits there have been several “bad moments” when he realises he is no longer capable of doing certain things.
“I’m very realistic about the progress of the disease. It doesn’t make sense to hope for a cure in the coming years. I might get lucky if the disease reaches a plateau, but we’re talking about small probabilities,” he says.
“My only hope is that the people who come after me will have a better prognosis.
“Right now, it’s devastating – one second you’re planning for your life, next you’re planning for your funeral.”
Mr Formosa says he is now turning his attention to raising awareness for others suffering from the same disease.
“Rare diseases tend to be underfunded. Most funds go to diseases that affect more people, which makes sense, but I don’t know if there is a disease more terrible than this. It’s like torturing someone for a few years and then pulling the plug.”
According to Mr Formosa, greater awareness and funding is crucial. Last summer, the Ice Bucket Challenge raised some €200m for ALS research, and organisers have now promised to keep the challenge going “every August until a cure is found.”
“Hopefully it will become a regular thing, and with time there’ll be a breakthrough in the research,” says Mr Formosa. As for himself, he says he is doing his best to stay positive. “I’ve always planned my future years in advance. From a certain point of view it’s a lot easier when there’s a time limit. Many times we don’t enjoy the life we’re living because we’re always looking for something new. It’s only when time is ticking that you realise that.”