SPENDING nearly a year in hospital would get most people down, but one Bidford resident refuses to let her ‘nightmare’ illness get the better of her.
Chloe Print Lambert was diagnosed with Ehlers Danlos Syndrome several months ago and faces daily struggles with seizures, joint dislocation, allergic reactions and sometimes she even stops breathing.
The 20-year-old weighs just under six stone and can only be fed through a tube directly into her bloodstream as her stomach, bowel and bladder no long work.
The former Stratford Girls’ Grammar School pupil was not diagnosed quickly by doctors – who placed her into an eating disorder clinic for a year before they discovered the illness.
Chloe told the Observer: “The doctors thought I wasn’t eating because I had a problem. But I was physically unable to eat due to my condition.
“It was really tough because no one believed me and some days I’d even doubt myself. It’s a relief now they know what is wrong.”
When Chloe is well enough to leave hospital she spends most of her time at home, where she lives with her step-dad, younger brother and mum Suze – who is her main carer and who Chloe describes as her ‘rock’.
But the effects of her condition are making it difficult for Chloe to stay at the family home in Bidford. She cannot move without the use of a wheelchair or hoist and the only shower in the house is upstairs.
The family – who own Cotswold Automotive near Evesham – are now tirelessly trying to raise the £10,000 needed to convert their garage into a bedroom with a separate wet room and toilet.
She said: “I desperately need a more suitable living space. I need to have surfaces that can be kept very clean due to the infection risk. And as I am still suffering with seizures and passing out frequently we desperately need more space to move a hoist around for those times I have to be put on the floor to keep me safe. My poor Mum’s back isn’t up to lifting me as a dead weight, especially as she had a stroke a couple of years ago and has been unwell herself.”
One of the hardest parts of Chloe’s illness – which is not curable but is controlable with medication – is feeling useless and like she has nothing to do.
She now uses her spare time to raise awareness about disability in young people and is working with local groups and schools to design posters and hold disability workshops.
She said: “What matters to me is that I raise as much awareness of how difficult it can be with a chronic illness and disability, raise awareness of the misconceptions associated with disabled people in society. I want people to know what it is like to be severely ill as a young person with a life-limiting progressive illness. I really hope I can find even more schools and groups to work with and raise disability awareness.
“I don’t hate that this has happened. It has actually turned me into a really strong person and I try so hard to turn everything into a positive.”
Visit www.gofundme.com/fundingchloe to donate or email Chloe at Chloe.firstname.lastname@example.org to find out more about raising disability awareness.