A mum and her daughter are celebrating after raising £100,000 in just two years.
Zoe Crowson set up the Phoebe Research Fund in 2015 to raise both funds and awareness of Recessive Dystrophic Epidermolosis Bullosa.
Her daughter Phoebe, now eight, was diagnosed with the condition shortly after she was born. It causes her skin to badly blister and break away at the slightest touch - and she also gets internal blisters which can lead to problems with swallowing and choking.
Even when the family got the fantastic news they’d hit such a key milestone, it was tempered by Phoebe suffering a bad fall at home, causing the skin on her back to tear and resulting in a trip to A and E and a week off from Copthill School in Uffington.
Despite what she goes through on a daily basis, she keeps a smile on her face according to Zoe and her partner Steven Arnold.
Every penny raised goes directly to a professor researching the condition.
Zoe said she was “overwhelmed” at the amount raised.
She said: “I am absolutely ecstastic. When you first start a charity even getting to the first £1,000 seems like an unbelievable feat so reaching £100,000 is just incredible and I’m so grateful to everyone who has helped us get this far.”
She said the charity had gone from strength-to-strength with the support of local businesses, including the Mercury which has publicised her efforts.
She said: “So many people have been involved in making this happen and all funds raised go directly into researching a cure for RDEB, not just for Phoebe but for other sufferers of this life-limiting skin disease.
“Awareness has been key to raising such a large amount of money and lots of celebrities have been involved in spreading the word.”
Zoe thanked all her supporters, in particular Bourne-based firm Pilot Fish and Martin Williams, who helped gain one of the charity’s biggest contributors Goldman Sachs.
Some of the highlights from 2017 included the annual charity auction and dinner, which included a talk by Eddie the Eagle, and the Phoebe Research 5k fun run at Rutland Water.
And Zoe is already looking ahead to 2018 with some exciting projects in the pipeline, including the popular charity auction and a documentary being produced by Zoe’s partner Steven Arnold, an actor best known for playing Ashley Peacock on Coronation Street.
Zoe said: “I am hoping people can watch the documentary and gain a true understanding of RDEB and the effects it can have on sufferers and their families. I am confident it will generate more interest and subsequently more ongoing support.”
Find out more about the charity by visiting www.phoeberesearch.org.uk