Watch: ‘Their Needs Don’t Reduce, They Only Increase’ – The Galea Family’s Relentless Push For Twin Brothers With Rare Incurable Genetic Condition
11-year-old twin brothers Len and Jacob Galea both live with Zellweger spectrum disorder, a rare genetic condition that is incurable and has dramatically affected their motor skills, coordination, cognition development and speech capabilities. But that’s definitely not going to stop their father Brian from going the extra mile for them. Literally.
This Sunday, Brian will leave on an insane endurance event, running and swimming from Mosta to Gozo’s Ta’ Pinu.
The annual tradition will this time see Brian running along with fellow fitness mates Karl Cortis and Natalie Briffa Farrugia.
This challenge will be also a physical test, as Brian will be pulling his sons in a dinghy during the swim between Malta and Gozo.
Now almost 12, Len and Jacob are immobile due to their condition, but keeping his sons active was always a priority of Brian’s. Feeling that regular physical activity helped to slow the progression of symptoms, Brian would engage them in everything from walking through valleys to swimming in a pool.
And through thick and thin, driven by love and fuelled by grit, Brian and his wife Alison have kept the twins going.
In an interview with Lovin Malta, Brian and Alison opened up about not only the upcoming challenge for charity, but also what life with the twins is like.
“Their needs don’t reduce, they only increase,” Brian said. “And we’re not ready to deny them of anything.”
But despite this admirable outlook, things don’t get too easy, especially with one salary for five people and therapy expenses.
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A key to the boys being able to move about their home more easily has been getting a much-needed lift, as Len and Jacob found their condition had worsened, getting around the home became harder.
They are now able to move safely from floor to floor, which has dramatically changed their quality of life. Brain and Alison paid tribute to the generosity that made this happen, as they described what a massive difference it has made to mobility and independence.
However, there are important sources of ongoing support still required.
The annual event is set to raise between €30,000 and €35,000, which will meet the boys’ therapy expenses for the year, additional home modifications, and other medical travels in the future under the Len and Jacob Wellness Fund.
This fundraising is important so that both Len and Jacob can go on receiving the necessary and appropriate care for their development. They have already benefited from their continuing physical therapy to perform better and retain, their motor skills because the condition is progressive.
Their goal is to ensure that Len and Jacob remain as engaged proficient and independent as possible regardless of the barriers.
“We promise, as parents, to the people around us, that we will keep working so that if research exists, or if anyone is willing to focus their studios on research to find a cure, we are ready to support and work so that our kids can have a better tomorrow,” the proud and hardworking parents finished.
To support Len and Jacob’s journey, donations can be made via:
- BOV IBAN: MT04 VALL 2201 3000 0000 5001 4493 242
- GoFundMe: Len & Jacob Wellness Fund
- BOV Mobile or Revolut: 99875178
- Cheques payable to Mr & Mrs Galea (A/C Len and Jacob Wellness Fund
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