THE family of an Ebbw Vale woman who wrote a series of horrifying letters saying she thought she was going to die in hospital are hoping to find a cure for the disease which ultimately claimed her life.
Susan Dagger Price, from Ebbw Vale, died on March 27 at The Grange University Hospital, aged 73.
While she was at Abergavenny's Nevill Hall Hospital Ms Dagger Price wrote letters that she was scared for her life.
The Ebbw Vale woman suffered from CREST for five years - a multisystem connective tissue disorder which affects several body systems.
At Nevill Hall, Susan’s daughter Tracy Congreve said her mum wrote letters saying she was scared she was going to catch an infection, that she was lying on dirty sheets for days and horrifyingly wrote that she thought she was going to die.
In response Aneurin Bevan University Health Board said: “The health board has met with Mrs Price’s daughter and conducted an investigation into the care her mother received.”
Now the family are hoping to find a cure for the condition, and have set up a fundraiser called ‘Sue’s Cure for Crest’ which has charitable aims towards highlighting awareness of the disease.
The family hope to become a registered charity in the future.
Ms Congreve said: “The reason we set this up was to raise awareness about the condition and the end result is to find a cure.
“The disease is non-curable, life limiting, and if myself or my sister have this condition there is no test until you get symptoms, then it could be too late.
“Our first event was at the EVI (Ebbw Vale Institute) in Ebbw Vale where my school friend of 45 years Amanda Duffy-Newman helped to start all of this off. She’s my angel, she put me in the right direction.
“All the staff there were amazing including Alison, Sam and Meg who is my life saver by doing all the signage and helping me on my journey. They have all worked very hard and I cannot thank them enough."
The event, which was held in July, raised £250.34. The family held a second fundraising event a couple of weeks later at a Friday market stall in Ebbw Vale on July 21 and in a touching tribute locals spoke of how much Ms Dagger Price meant to the community.
Ms Congreve said: “Our second event was on 21 July and was held by myself, husband Darren and our sons Josh and Sam. We held a Friday market stall selling mum's clothes, shoes and bags again and made £221.
“The people wanted to stop and tell us stories about mum and to say how shocked they were of her passing. Things that stood out was mum's beauty inside and out, her kindness, and generosity. She was a hairdresser in the community for over 60 years.
“She was known as Sue on the Gold Stall on a Friday Market in Ebbw Vale for over 20 years."
She added: “I would like to say a big thank you to Darren, my husband, Josh and Sam my sons, mum’s sister Julie, old friend Sharon, sister in law Tracey, good friend Ceri, good friend Suey.”
The next fundraiser event is Friday, November 17, at the Ashvale Club, Tredegar. It will include singers, a drag queen, raffles and an auction, with the doors opening at 7pm.
A £5 entry charge is payable on the door.
The fundraiser set up by the family can be viewed You can view the GoFundMe page here.
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