An inspiring mum has arranged a charity event to raise money for the charities that support one of their children.
Bethanie Thorn, 17, was diagnosed in 2011 with an extreme form of the incurable Ehlers-Danlos Syndrome, a condition which affects the body’s connective tissue and affects 1 in 500,000 people, as well as secondary conditions Gastroparesis and Pseudo-Obstruction.
The condition means that Bethanie lives in constant pain as it affects 95% of her body and means she has to take 27 tablets per day as well as being tube fed.
Her mum, Julie Thorn, 42, of Silver End, said: “It can be very hard, especially when Bethanie is in real pain, but she really is an amazing person and we just keep looking to the future.
“She won’t let the condition stop her from achieving her dreams.”
The family have a long history of fundraising for three charities associated with Bethanie’s condition, Ehlers-Danlos Support UK, The Sick Childrens Trust and the Pseudo Obstruction Research Trust (PORT).
Julie adds: “PORT is vital in everything it does. As well as offering support and advise to those that have the condition, it also funds research into it.
“Without money, there can be no research, and without research, there is no hope of finding a cure.”
On September 7, they have organised a curry and live music night at the Little India restaurant, Little Maplestead to raise vital funds.
They need to sell 100 tickets for the event, which includes a three course Indian meal and live music from the four-piece rock band from Coggeshall “Loose Joints”, and “Rule of Three”, a male vocal trio from Witham, as well as The Essex Factor star Natasha Corrigam, who also has the condition, and Josie Beaumont.
Tickets cost £20 for adults and £15 for children (12 & under), or £5.00 if, like Bethanie, you are tube fed or you are on TPN. It starts at 6.30 and there is a smart/casual black and white dress code.
Julie is also walking the Moonlight Colourthon, a half marathon at night, on July 5 and is hoping to raise an additional £500 for the charities.
To donate visit: virginmoneygiving.com/team/BethaniesBattle For tickets, contact: Julie Thorn 01376 585985 or 07515636143