Lowestoft father raising money for research into rare disease affecting his daughter
- Credit: Archant
An inspirational father from Lowestoft is gearing up for a unique skydiving experience to raise money for a rare disease that his daughter suffers from.
Paul Rains, 48, will be jumping from the Ellough airfield in Beccles tomorrow to raise money for the Scleroderma Society UK and also to try and raise awareness of the disease.
Scleroderma is a disease in which the immune system attacks itself and hardens the skin. It causes tightening of the skin on the hands, face, chest, arms and other joints and affects around 12,000 people in the UK. A more severe effect of Scleroderma called 'diffuse scleroderma' also attacks internal organs and this is what his daughter Ashton, 24 suffers from.
At times, she experiences ulcerated fingers, toes and knees and also has Raynaud's- a common condition that affects the blood supply to certain parts of the body.
Miss Rains has had mild chemotherapy for her illness, alongside numerous other IV drugs in hospital, and has tried different tablets to try to stabilise her ever growing disease.
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Miss Rains, who went to Denes High School and Great Yarmouth College before studying Drama at the University of Lincoln, said that 'things have been like a whirlwind' after initially being diagnosed with Raynaud's at the age of 18.
'At the time I thought I would grow out of it but if I went outside I would go from hot to cold and I then started to develop painful ulcers,' she said.
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'When I was in Lincoln my lungs started failing and I had to leave university and write my dissertation at home whilst having chemotherapy.
'At the minute I am struggling but my lungs are stable. I have digital ulcers on tips of my fingers, knees and toes and if I get a paper cut or small scratch, it forms an ulcer meaning I struggle to do everyday things.
'The only thing the doctors can do is just manage the disease as there is no cure, however, me and my family and determined to raise as much money and awareness for this disease as we can.'
Miss Rains also describes how her father, who works for EU Car Parts, felt the skydive 'was the only thing he could do' to help raise important funds and awareness.
'The last couple of years have been quite hard and my dad wanted to do something big enough to raise money. His friend skydives for a hobby and he is very excited about doing it.
'We have already raised a significant sum of money and this is his way of helping. The more we raise the happier he is getting.'
All of the proceeds will go straight to the Scleroderma charity which will help fund new research to help find a possible cure.
Miss Rains has also started a Facebook page called 'Me, Myself & Scleroderma' which reaches out to fellow sufferers.
To make a donation visit: www.justgiving.com/paulrains
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