Bjorn Formosa has two countdowns: one related to his incurable ALS condition and a more exciting one… his wedding in December.

“On the one hand there is nothing much we can do about the disease’s physiology for now. Unfortunately, with every passing day, the developing symptoms show that the condition is getting worse.

Maria Muscat and Bjorn Formosa will tie the knot in December. Photos: Matthew Mirabelli

“On the other hand, we fill up our days with several activities and look forward to exciting events such as our wedding,” the young man told The Sunday Times of Malta ahead of his birthday this week.

Despite the uncertainty of his future, he is sure of one thing: for as long as he lives Mr Formosa will always “think big”.

“I still live life with the same principles I had before I was diagnosed. When you’re in this situation you can’t think smaller. You have to always think big.”

ALS is a progressive neuro-degenerative disease that affects nerve cells in the brain and 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 fully paraplegic state.

Several have heard of this rare disease with no cure because of the successful awareness campaign in 2014, called the Ice Bucket Challenge.

An art expo in aid of ALS Malta will be held on December 11 at the Naxxar Oratory (Victoria Hall).

One of the people who took the challenge was Mr Formosa himself, before he was diagnosed. He spoke to the Times of Malta in August last year, in what was to become the first media outreach to raise awareness.

Mr Formosa has come a long way since then, setting up a group that raises funds for research and expensive equipment that makes life a bit better for those with ALS. But the most difficult part of the journey remains accepting the state of the condition.

He explained that the disease has four stages, and he is somewhere between the last two, having started to experience respiratory issues.

This week, he started using a non-invasive ventilation machine and mask at night, something he should have technically started using two months ago.

It was challenging to come to terms with the fact he needed to use the machine, just as it had been difficult a year ago to deal with the reality that he could lose the ability to walk.

“The machine helps me continue to live a normal life but the problem with ALS is that the disease doesn’t stop there. It keeps progressing.”

Mr Formosa admits that sometimes it is tough, and one disappointment is that as he gets weaker, he might not be able to see his plans through.

This week he took to Facebook saying that sometimes, one just felt like giving up and letting go.

“You literally can’t breathe, you’re gasping for air and you can start to sense death nearby... It’s a terrible feeling when you arrive in the late stages of ALS.

“But then you put on a mask, you get assisted ventilation and everything starts getting clearer again. I still have many objectives, many things to do in life. I have a wedding and a person who loves me to look forward to. We have a mission to look for a cure and save other people’s lives,” he wrote.

The ALS Malta foundation has a series of upcoming events, including Mr Formosa’s birthday fundraiser on October 21, a Halloween activity for the end of the month, a November fun-run, a pantomime and an art expo in December.

But two highlights are the wedding of his fiancée’s sister next month and his own marriage to Maria Muscat on December 3.

He proposed to Ms Muscat last month, a year since they started dating.

“I wanted the proposal to be the starting point of a long relationship in which we defy odds and live as many years as possible together.”

Mr Formosa had just one small problem in the run-up to his proposal. Since Ms Muscat is usually with him throughout the whole day, seven days a week, he could not go shopping for an engagement ring, so he had to ask his friend to design it specifically for her.

Ms Muscat commits all of her time to the voluntary organisation and Mr Formosa himself, and she believes that the two keep each other going.

More information on how to help out the foundation on www.alsmalta.org/donate. You can also send an SMS to 5061 8170 to donate €4.66, or 5061 9271 to donate €11.65.