URDDAD-FOUNDATION OUR STORY

URDDAD-FOUNDATION you may think this is a strange name for a rare and ultra Rare Disease Charity well it is a tag name for The Ultra Rare Disease,Disorders & Disabilities Foundation we are a charity from Northern Ireland our Charity Number is NI00089 we are a LTD Charitable Company and Established in 2013we have been set up by Terry and Maureen Hoey the grandparents of Cavan Tommy Hoey their grandson has been diagnosed  with two rare diseases XLP and EBVHLH.

Cavan was diagnosed at the age of five year old when he come home from school saying to his mum he was unwell, his mum and dad thought it was just a childhood illness they did not know what was going to hit them as doctors tried to understand just what Cavan had they knew he was losing weight and becoming a very sick little boy even though doctors at his local hospital tried to find the cause of Cavan’s illness they had to send his bloods all over the hospitals throughout the United Kingdom to try and get a diagnosis  it.

It took them a few days as hospitals come up with various diseases until Royal Bristol Childrens University Teaching Hospital come up with the correct diagnosis of EBVHLH and XLP they requested Cavan be transferred to the Royal Bristols Childrens Hospital urgently when he got there he was given just 48hrs to live and when his grandparents arrived from Northern Ireland to see him they could not believe it was their little grandson  they had never heard of Rare Diseases or EBVHLH XLP it was such a shock for them.

When they got back to Northern Ireland they set about researching into what Northern Ireland’s Health Service to find out what they knew about rare disease, they were shocked to find out it was very little to no knowledge at all, they lobbied the Northern Ireland Health Service and all the local MLA’s and then the Northern Ireland Assembly and they had a job trying to get people to listen Cavan’s grand dad set up the blog site’s  to spread the word about Cavan their little grandson.

It was hard for them to raise the profile of their little grandson who lived in Bodmin in Cornwall, England it was so hard for them to keep the word out there about Rare Disease and also raise funds for Cavan it was an uphill struggle for them and also trying to deal with what was happening to their little grandson they have been raising funds for him for the past five years,Cavans grand dad become unwell he was diagnosed with kidney failure they felt they would have to raise the profile of Rare Disease.

The Ultra Rare Disease, Disorders & Disabilities Foundation were set up it is fully in its own right, it will raise funds on its own and will be to raise awareness of rare diseases and ultra rare diseases, it is not making it any easier to raise funds for our cause we want to set up a Children’s retreat in Ireland for Children all over the world to come to for rest bite and to help families with the psychological problems rare disease brings to siblings and parents If you feel you would like to help us with our fundraising you can do so by bank transfer to Danske Bank sort number 95-06-79 Acount No 80014729 or you can TEXT.RDFC13£2/£5/£10 to70070 to donate eg RDFC13 £5   Just Text Giving By VODAFONE

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