Lucy Sephton, diagnosed with scleroderma 16 years ago, talks about how proud she is of her daughter for raising a staggering £4,388 for SRUK by chopping her hair for charity.
“I am Daisy and I'm 11 years old, my Dad is 44, my brother is 7 and my mum is 40, which is well impressive. When my mum first got diagnosed with this disease they told her she would have a life span of 10 years. My mum got this horrible disease at 24 and that meant she would have gone at 34 but she is 40 now so she has lived another 6 years, which to me is amazing.
I raised money by having my long hair cut off to make into wigs for children with cancer from the Little Princess Trust. I also donated all the money I raised to Scleroderma & Raynaud's UK to help all the amazing people like my lovely mummy"
Lucy Sephton, Daisy's mother, was diagnosed with scleroderma when she was only 24 and was told she only had 10 years to live. 16 years and two children later, Lucy is still fighting her disease and defying her condition.
She recalls 'when I was younger I always felt the cold but didn't really think anything unusual about it. It was as I got into my teens that I started to have Raynaud's but also really achey and painful joints that would swell up. There were some days where I simply couldn't get out of bed.
When I first went to the doctors they referred me to a rheumatologist and I was initially diagnosed with mixed connective tissue disease. It was only when I went for some other tests that they suggested I may have scleroderma'.
When discussing her support network she mentions that 'since Daisy did her charity chop, I've opened up to school', showing that Daisy's wonderful act of kindness helped others in so many different ways. Lucy says 'I stay positive with the support of my family, especially my children, they are really what makes me function in the morning, I don't know where I'd be without them.'
Daisy's thoughtfulness means that not only is she helping children with cancer regain some normality in their lives again, but she is also helping the community of those who live with Scleroderma and Raynaud's alongside helping her mother open up about her condition.
We want to say a massive thank you to Daisy and her mum. Their incredible support means so much to us and our community.
We need people like Daisy to keep raising awareness of Scleroderma and Raynaud's and her fundraiser is a wonderful example of the activities you can do to help others.
We have a list of fundraising ideas on our
Fundraising A-Z page as well as a calendar of events you can partake in to raise money for Scleroderma and Raynaud's UK.