In 2016 my brother in law Fiachra was diagnosed with an extremely rare inherited disease called HDLS (Hereditary Diffuse Leukoencephalopathy with Spheroids). Fiachra inherited this disease from his mother who has sadly passed away. HDLS is a progressive neurological degenerative disease that results in an inability to walk, talk and eventually progresses to end stage dementia requiring full nursing care. This progression is over short years.
Fiachra is married to my sister Therese. Fiachra is a kind, sociable, caring beautiful person and is battling his illness bravely. Therese and Fiachra have two young children Ferdia aged 5 years and Willow is four years. Fiachra is currently deteriorating rapidly experiencing difficulty walking and his speech is becoming affected. Fiachra is currently fighting for his life!! He is also fighting for future treatments for his family.
Fiachra is travelling to Liepzig, Germany imminently for a novel treatment which is hoped to stop further progression of this awful disease. This treatment will involve months of treatment and isolation in a hospital in Germany. Fiachra needs this treatment now.
I am on a fundraising committee with five amazing people from Ransboro: Carole Brenan, Iain Howard, Paul Scanlon,Clive Kivlehan and Alan Molloy with the full support of Ransboro Development Association and the wider Ransboro/ Strandhill Community.
We are fundraising to support Fiachra and Therese with the expenses that will be incurred over the next few months in Germany. Therese will be unable to work during this time. We need your help to promote Fiachra's independence on return home. The monies raised will be utilized to adapt Fiachra’s home and purchase a suitably adapted vehicle for Fiachra’s needs and other expenses that will arise on his return from Germany.
As a committee we have lots of fundraising events planned but due to the present world crises we have to put these on hold. Sadly, Fiachra does not have time to wait he urgently needs to start this treatment .
All donations will be transferred to Therese and Fiachra.
Thank you for taking time to read this and for your donation,
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