Len and Jacob are 9-year-old twins who suffer from a very rare disease called Infantile Refsum disease (IRD).

This medical condition falls within the Zellweger spectrum of peroxisome biogenesis disorders (PBDs), which 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.

In an interview with The Malta Independent, Brian Galea, their father, explained how he had to resort to google to see how people around the world perceive and deal with such a disease due to the lack of available research and awareness on the matter.

“Due to our situation, we are currently trying to find out what the best of therapies are, and other methods we can adapt and offer to our children to make their lives a little bit easier,” he said.

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

Brian said the twins both tested positive for the disease after being genetically tested recently. He said that at the age of three, they noticed that the twins used to fall more often than peers their age. When this issue was brought to the attention of neurologists and doctors, the parents were encouraged to seek help as this was not the norm for such young children.

Brian explained how it seems that the twins suffer from the mildest form of this disease, as usually children who are diagnosed with a severe case of Zellweger do not make it past their first year of life.

Although the twins have been exposed to several therapies, such as hippotherapy, swimming and basic boxing routines, the family wants to introduce a better tailored plan for the twins needs. The father said that this can be achieved by promoting the rare disease to incentivise more research, a process which costs money.

The Galea family had already tried to resort to major NGO stakeholders, but were told they could not use their funds at that time, as the therapy needed for the children went beyond the scope of the set funds.

Hence in 2021, the family set up a GoFundMe page in the UK, to try and mitigate therapy costs. In a year, they have managed to gather enough funds to cover six years of costs for both Len and Jacob.

Recently, the family together with a group of athletes have been busy organising a sporting event which is set to happen on the 15 of May, in hopes of gathering more funds for research on the condition.

“This time the outcry is different” said the father, who is also an athlete and will participate in the event.

Forming part of the event organisers is athlete Neville Calleja, Brian’s friend.

Having already participated in a 600km charity row between Sardinia and Malta over a 7-day period a few years ago, from which the sum of €138,085 that was gathered and donated to various NGOs offering care to terminally ill children, Neville said that he had to do something for the twins.

“I did not have it in me to sit down and stare at the situation the twins were in, I had to get up and act” he said.

This year’s charity event will be all about running, swimming and running again.

Having nothing but words of praise for the Galea family, he describes them a ‘exemplary’. He said that he “wanted to offer all my help to be able to give a better life to these two beautiful creatures of God.”

During the event, athletes will be running a total of 33km from the Marsaxlokk Shrine to the port in Cirkewwa, where they will have to swim 7km between Malta and Gozo, and lastly run the last distance between the port of Mgarr and Ta’ Pinu Church.

“All this to raise more funds for research on the very rare condition of Infantile Refsum disease,” said Neville.

The goal is to reach €50,000 in donations.

Neville explained how this fund will not only benefit Len and Jacob, but will also support other individuals who suffer or may suffer from this condition in the future.

Brian Galea explained how this year’s distance has been lengthened since they “want to promote exercise, as even the twins themselves are highly engaged in physical activity”.

Currently, Len and Jacob are under the care of their father and brother, Isaac, who are both qualified trainers. Their mum, Alison, is also going beyond her limits daily, running errands for the boys. She keeps herself active by running long distances and exercising, whenever possible.

Speaking about the importance and urgency of this research, Brian said: “The earlier we know what we can do for them the better the outcome”, as currently there is no defined future for these children. He also added that if there is a known cure around the world, he would be willing to introduce it in the lives of the twins as the family is willing to do anything to “positively impact these precious lives”.

Brian said that they like to imagine their glass being half full, rather than half empty.  They do not want people to pity their situation, but rather acknowledge their situation and help however they can to help their children move forward.

The Galea family together with Neville Calleja are urging the public to help them in donations, no matter how small.

Donations can be sent via bank transfer on the link hereunder.

https://www.facebook.com/LenandJacob/