Dedicated Parents Taking On Swim-Run From Ċirkewwa To Valletta For Twins With Rare Disease
A pair of extremely dedicated parents are set to take on an ultra challenge comprised of a swim and a run from Ċirkewwa to Valletta – all to raise awareness and funds for their twins.
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 ones.
“We are Brian and Alison Galea. Parents of 22-year-old Isaac and 10-year-old twins, Len and Jacob. We wish to share our story with you,” the parents told Lovin Malta.
“Len and Jacob looked like healthy born babies until age three when we started noticing that they were falling more than other children their age.”
“Since then, we haven’t stopped with ongoing check-ups, follow-ups at CDAU & Mater Dei plus daily costly therapies to help the boys deal with their mobility disorder.”
In February 2022 their young boys were diagnosed with a rare disease falling under the name of Zellweger. This is a metabolic degenerative disease that can have serious consequences.
“In order to raise funds, we launched the Len and Jacob Wellness Fund, and two high-endurance charity events were organized in 2021 (Mosta Basilica to Ta’Pinu Basilica) and in 2022 (M’Xlokk Shrine to Ta’Pinu Shrine).”
Event details
“Both have been a success and funds have been collected to support the boy’s therapies and now focusing on research in finding a possible cure.”
“This year the same teams and athletes are preparing for another event on 3rd June – a Swim-Run will be done from Cirkewwa to Valletta, swimming across bays and running along the roads.”
Funds that will be collected will support the boy’s therapies, living, and research expenses.
Check out the boys’ Facebook page here: https://www.facebook.com/
And you can donate here:
BOV IBAN: MT04 VALL 2201 3000 0000 5001 4493 242
GoFundMe: https://www.gofundme.com/f/len-jacob-wellness-fund
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