Two years ago Bjorn Formosa feared his end was near, but he has soldiered on to 2020 and is now gearing up for the completion of a second care home for people with neurological conditions.
The young man has campaigned tirelessly to raise awareness about amyotrophic lateral sclerosis (ALS) ever since he was diagnosed with the fatal disease aged 28 in 2015.
Just a year before, Bjorn had joined millions all over the world taking part in the Ice Bucket Challenge to raise awareness about ALS. One of the people behind that viral challenge, Pete Frates, also diagnosed with ALS, passed away this month aged 34.
Known as the man who made the Maltese aware of ALS, Bjorn told Times of Malta that back then “all we wanted to do was make some noise”.
That “noise” saw the setting up of the ALS Malta foundation and the opening of Malta’s first home that offers services to patients with ALS, multiple sclerosis and other neurological diseases.
That home in Qormi is however already full, prompting him and his wife Maria to campaign for a second care facility. They now hope to have a second Dar Bjorn in Żebbuġ completed by the end of 2020.
ALS robs people of their ability to walk, eat and breathe. The disease destroys motor neurons, the long nerve cells in the brain and spinal cord that tell the muscles what to do. Signals from these nerves gradually stop reaching the muscles, which weaken and die.
I cannot give up now, there are so many things to look forward to
There is currently no cure for ALS and the disease is fatal, but Bjorn feels that “so far” he has been doing well, seeing one dream come true after another.
But the biggest dream ever is “10 times bigger” than the Qormi Dar Bjorn, and the Formosa couple have intensified their efforts.
“I cannot give up now, there are so many things to look forward to. I hope to live to see the second house opening its doors,” he said.
While the Qormi residence hosts around 13 people in a semi-independent living setting, the Żebbuġ one would be able to accommodate around 30 people and will house several facilities, including a swimming pool and clinics.
The total cost of the project will reach €6 million, and the foundation has so far collected two-thirds of the funds. While the building of the residence should be completed by the end of 2020 the furnishings depend on the donations received throughout this coming year.
Bjorn noted that there is a waiting list of around 100 people for such care homes. Their ages range between 18 and 70, with the majority being in their 30s and 40s.
The conditions vary as well, and apart from ALS and MS, there are also residents with Parkinson’s disease and Huntington's disease among others.
Dar Bjorn is run by ALS Malta, with the government subsidising most of the costs of the care service. Running the Qormi house costs nearly €1 million a year and running costs for the Żebbuġ home will reach €2 million yearly.
But apart from running Dar Bjorn, the foundation also helps patients who need equipment for their own home and therapy that run into tens of thousands of euros.
In a bid to help the ALS Foundation raise money for this second home, GlobalCapital Life has been donating a percentage from the sale of every policy sold between November and December.
More information on ALS Malta is available on Facebook or www.alsmalta.org.
One can also send an email on info@alsmalta.org or call on 7920 9420 for how to help the foundation.