A charity event to be held on 3 June for the benefit of Len and Jacob Galea, twins who have a rare disease, is aiming to raise around €25,000 for living and therapy expenses and to raise awareness of their condition.

Len and Jacob are 10-year-old twins who suffer from a very rare disease called Infantile Refsum Disease (IRD), which falls within the Zellweger spectrum of peroxisome biogenesis disorders (PBDs). These are a series of genetic inherited disorders that damage the white matter of the brain and affect motor movements, causing speech impairment and other difficulties including mental development.

The Malta Independent on Sunday caught up with the twins and their parents, Brian and Alison Galea, ahead of the event.

The parents became aware of the problem when the twins were about three years old, as they noticed the boys falling more often than their friends. The twins only tested positive for the disease last year, following genetic testing.

The Galeas had previously said they were still finding ways to deal with the disease due to a lack of available research and awareness. “Unfortunately not much has changed since last year,” they said.

“Even if you ask professionals for help, they wouldn’t be able to provide you with a lot because there’s so little information available for doctors to work with. The information is practically non-existent.”

“Just this week we sent some skin and blood samples to a lab in the Netherlands to try to determine the exact genetic code of this disease to see if there is some sort of cure. We’re also in contact with Nancy Braverman at Montreal’s McGill University who specialises in Zellweger-spectrum inherited disorders.”

The parents explained that, until now, they have learnt that the twins should be introduced to a certain diet that excludes dairy products and certain types of meat “as their body produces phytanic acid which remains in their system, which if left untreated, can severely damage their vision, hearing, smell and movement ability”.

The older they get, the more the boys need to keep up the fight against their own bodies. In order to mitigate against the worst of the disease and maximise their flexibility, the twins are exposed to several therapies, such as horse-riding, swimming, yoga and basic boxing. “We train the twins almost every day; the more they move, the less rigid they become,” said Brian.

“You try to do your best because you want to see your children thriving but it all boils down to money at the end of the day; it’s expensive to sustain children with this condition. There are daily living expenses, physical therapy costs, not to mention funds given to research causes. All these financial woes lie on top of the emotional and mental challenges that we have to deal with too,” the parents said.  

“Luckily we’re still working a lot. People may see us as coping on the outside but, on the inside, we’re constantly tired and feeling as though we’re workhorses in a field,” said Alison.

The Galeas had already tried to request funds from several charities, but were told they weren’t eligible as the therapy needed for the children went beyond the scope of the set funds.

The family have therefore resorted to hosting charity endurance events, the latest one set to happen on 3 June, in the hope of gathering these funds for research and expenses. In 2021, the family set up a GoFundMe page in the UK to try and mitigate therapy costs and are now looking to raise around €25,000.

“We’ll be swimming and running all along the north-eastern coast of Malta, from Cirkewwa to the breakwater in Valletta. Altogether, it will be a 24km run and a 4km swim,” said Brian.  

“This is the third such annual event that we’ve planned. While it’s not open to the public, anyone is free to join the route and we’re not going to stop them if they want to run or swim alongside us. People will also be able to follow the route on the Facebook page, the Len and Jacob Wellness Fund,” said Galea. 

Speaking about the importance and urgency of this research, Brian said: “Aside from the funds that help with the boys’ daily needs, the challenges that we carry out every year are intended to try to find someone who can focus his or her research on this particular issue. I know there’s an entire dictionary full of metabolic disorders but if someone could shed some light on this particular disease we would be entirely grateful.”

“We can say the kids are unfortunately afflicted with this condition but, at the end of the day, they also gave us the gift of life so it’s good to keep things in perspective. And we also thank God that the rough times that we’ve endured have actually brought us closer together as a family, instead of pulling us further apart.”

The Galeas said that they are grateful for the help that they have already received. “That’s all there is to say, really,” said Alison. “Our whole family is happy with the help that others are offering and there’s an endless list of people who we would wish to thank. We would be lost without the help that we receive.”

“I like to say that the boys are not mine but are Malta’s and, ultimately, the world’s because we’ve received a lot of help from all over the world,” said Brian.

“We want to keep on promoting positivity because around us there’s too much negativity. We always want news to be positive and this story is no exception,” Brian said. “It’s about being consistent. This is not a short race but a long marathon and we’re going to keep going till the very end, that’s for sure!”

The family is asking for any donations to their cause, whether large or small.