THE UK has a new charity with a brave little girl from Bury at its heart.
Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS).
The rare genetic condition causes collagen deficiency and means Annabelle is at daily risk of her internal organs and arteries spontaneously rupturing.
After 12 months of tireless campaigning by her parents Sarah and Jared Griffin, of Wilby Close, Brandlesholme, their brainchild Annabelle’s Challenge now has official charity status.
Their VEDS awareness crusade has raised £15,600 to date and Annabelle’s Challenge will now partner the EDS diagnostic service in London and Sheffield to support to newly-diagnosed patients.
Annabelle was diagnosed with the rare and incurable disorder in December 2012, aged three. The latest figures suggest just 10 people a year are diagnosed with VEDS.
Sarah said: “Our ultimate aim is to reduce the number of people being misdiagnosed or going undiagnosed by increasing public awareness and the education of medical professionals.
“We also will encourage doctors to progress further with research into funding a cure.”
Earlier this year, an injury to Annabelle’s nose following an accident at home required an emergency visit to accident and emergency (A&E) and a plastic surgery operation under general anaesthetic.
Jared said medical professionals have knowledge of EDS but are often not aware of VEDS — something which prompted their decision to register Annabelle’s Challenge as a charity.
He added: “Annabelle has been so inspirational.
“With the strength and support of our family and friends we have gained significant momentum with raising awareness, which can be emotionally draining for us.
“We have to manage each day as it comes because we know how fragile Annabelle is.
“She bruises very easily and the slightest knock could mean a visit to A&E.
“The worst thing is not knowing when something could happen.
“She could be sat watching TV and without warning could have a spontaneous rupture of her internal organs, which could kill her.”
Jared and Sarah are also parents to 17-year-old Ryan and Oliver, aged 12. The boys frequently fundraise and hold awareness events at Bury College and Tottington High School.
The charity’s trustees are calling on members of the public to help with fundraising and share their skills to help expand Annabelle’s Challenge’s work.
Sarah has already begun working as a volunteer parents’ co-ordinator for national charity Ehlers-Danlos Support UK (EDS UK), which Annabelle’s Challenge will continue to support.
A team of volunteers and trustees recently donned their running shoes to take part in the 5km Manchester Electric Run and the 10km Great Manchester Run, raising £1,000.
The family’s charity ball in aid of EDS UK is taking place on June 6 at the DeVere Village Hotel in Bury. Tickets cost £30 including a three course dinner, live entertainment and a charity auction.
For more information: go to annabelleschallenge.org