Len and Jacob Galea were healthy toddlers, sometimes registering progress before the expected average age.

But soon after they turned three, the twins started slurring their speech and tripping more frequently, falling and cracking their head open on a kerb or swimming pool ledge.

“These twins, who had started talking before they were expected to, suddenly couldn’t hold a pencil. It took me a whole summer to train them to hold a pencil,” their mother Alison told Times of Malta.

For six years, the Galeas lived in limbo, unable to bring themselves to watch videos of the twins that had been shot before their world was turned upside down.

Len and Jacob underwent multiple tests under the guidance of their neurologist and tried out various therapies, but sadly they continued regressing.

It was only in 2022, when they were nearly 10, that Len and Jacob were diagnosed with a rare metabolic degenerative disease referred to as Zellweger.

Until then, they did what they knew best: keep active and eat healthy, something the parents believe substantially slowed down Len and Jacob’s regression.

While their father Brian walked them through valleys and up rocks, Alison cheered them on in the swimming pool and their brother Isaac, 11 years their senior, held boxing workouts with them.

“All we knew was that their condition had something to do with mobility, so we made it our mission to keep them active and strengthen their core. We also realised that when they ate certain items they regressed.

"So, we eliminated products like dairy, and drained other items, such as chicken, of natural fats as much as possible. We immediately noticed a difference – their vision improved and so did the way they communicated,” Brian explained.

“But throughout those six years, we felt lost. We had no idea whether they will grow out of whatever was happening to them, and whether they will become stronger than the condition, or weaker.”

Alison recalls feeling desperate: “I was with them 24/7, seeing little to no development. I felt that my teaching efforts were useless. It took me a whole summer to teach them to use a pencil. They would look at the paper in front of them and burst into tears.

“They themselves were frustrated. They went from communicating clearly to not being able to express themselves at all… we recently signed a paper asking for permission, on their behalf, to skip exams between middle and senior school.

"These things make the pain for all of us more real,” she said, visibly emotional.

Asking for help and raising funds

The turning point for the parents came one day in 2021 when they saw their younger sons attempting to cross the road and tripping three times.  

“Alison and I believe that if you fall, you do your best to get up, but by now we knew we needed to ask for help. In the absence of a diagnosis, we could not receive the help we needed from the state.

“I was working two jobs while Alison took care of them full time. They needed one-on-one therapy that cost triple what it would a child without such challenges. Our grocery expenses more than doubled.

“So, we followed the advice of a friend and asked for help. We set up a crowdfunding page and created the first fundraiser to be able to continue the therapy and ensure – as much as possible – that the children’s condition doesn’t become worse.”

That year, together with Karl Cortis and Natalie Briffa Farrugia, Brian ran from Mosta to Ċirkewwa, swam to Gozo and ran the rest of the way to the Ta’ Pinu sanctuary.

The team decided to repeat the fundraiser in 2022, and this time they left from Marsaxlokk rather than Mosta.

Will the worst happen today?

A few months before the 2022 event, the children were finally diagnosed.

Brian recalls receiving the diagnosis three days after he turned 40: “They say life starts at 40, but the diagnosis dealt a big blow to my mental well-being. It took me two whole weeks to come to my senses.

“We had a name for it: Zellweger, but no further answers. We now knew for sure there was no treatment and there was still lots of research to be done.

"We got in touch with support groups – outside of Malta – for relatives of people suffering from the same disease and contacted two other children with the same condition in Malta.”

One year on, Brian and Alison tell Times of Malta they are in a much better place.

The support they have gained since asking for help has turned their lives around, this time in a positive manner.

In following fellow parents’ advice and opting for therapy and a diet that better targets their condition, Len and Jacob can now communicate better, hold brief discussions and maintain better balance.

This does not mean that their worries are over.

“We still live in fear. When I wake up, every morning, I still think: will the worst happen today? Will adolescence make their condition worse? But I know I cannot do anything about that, so I brush off those thoughts and focus on what I can do: keep them active… and happy,” Alison adds.

For the first fundraiser this year, taking place on June 3, Karl, Natalie and Brian are planning to swim and run from Ċirkewwa to Valletta.

More information is available on 9987 5178 or www.facebook.com/ LenandJacob. People can keep supporting the twins by donating on www.gofundme.com/f/len-jacob-wellness-fund or through BOV IBAN: MT04 VALL 2201 3000 0000 5001 4493 242.

BOV Pay donations can also be made on 9987 5178.