A GROUP of nine cyclists from Scotland set off from Malin Head on Monday to cycle 600 kilometres and raise funds and awareness for ATTR Amyloidosis research in Ireland.
The illness sometimes known as “Donegal Amy”, because of its prevalence in a specific area of Donegal’s west coast, claimed the life of Xavier Aguirre, brother of the trip organiser, Aja.
Speaking to the Donegal News on Tuesday as they took a break in Glenties, Aja explained that she founded the charity, Xavier’s Legacy, a few weeks after her brother died, aged 30, having been diagnosed just weeks before he died.
Their cycle this year will finish at the Cliffs of Moher on Sunday, July 16, what would have been Xavier’s 33rd birthday.
“We are making our way from Malin Head to the Cliffs of Moher, covering 600km through Donegal, Leitrim, Sligo, Roscommon, Mayo, Galway and Clare,” Aja said.
“The aim: to raise both awareness and funding for research into Amyloidosis – a rare disease in which early detection and intervention often proves life-saving.
“Looking back on photos of Xavier after his passing, the family noted tell-tale signs. The puffed up complexion, the purple/black marks under the eyes (which could easily be mistaken for a lack of sleep). None of these things were evidence enough of a major problem. However, in the months leading up to his death, Xavier complained of feeling full all the time (bloated even), and was unable to use the toilet due to an inability to expel fluid.
“It would be impossible to forget who he was and what he was. Xavier was a fun-loving scruffy-bearded, curly-haired young man with an infectious (and often incredibly high-pitched) laugh,” she said.
Aja managed to get from her home in Nottingham to Xavier’s bedside the day before he died in Canada.
“This year the ride pays homage to Xavier’s Irish roots (in Enniskillen and Connemara), and will be looking to raise plenty of awareness and funds for research and resources for Amyloidosis patients in Ireland,” she added.
To go to their website and donate: amyloidosisjfx.wixsite.com/amyloidosisawareness.
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