THE parents of a seriously ill girl have released a bold picture showing how a rare condition affects her on a daily basis.
Roger and Debbie Hambleton took the brave step of posting the picture of their ten-year-old daughter, Beth, online to show although she looks like a healthy child, she is battling illness every day.
Their online post described comments made to the family saying there was nothing wrong with Beth and it was all made up.
The family took inspiration from Crohn’s patient Bethany Townsend, whose picture showing her in a bikini with a colostomy bag went viral earlier this year.
Mr Hambleton, 39, of Helmores, Laindon, said: “She looks like a slightly underweight little girl.
“When she is fully clothed you don’t notice, but the picture is basically to show it’s not normal, she’s not a normal child, this is what she has to put up with.
“When people see her jump in and out of a wheelchair, we get funny looks.
“Kids don’t do anything – it’s just a girl in a wheelchair – but some adults try to diagnose her as theywalk by. One person even walked into a post in Lakeside while looking.
“It winds me up more than it does Beth – she just ignores it all.”
Beth has been diagnosed with a number of conditions including Ehlers-Danlos type six, a very rare form of the connective tissue disorder, and eosinophilic enterocolitis, which is related to a digestive system disorder.
Her conditions are so rare, Beth may feature in a medical journal.
She is fed by a tube directly into her stomach and will never be able to eat, but the family, including Luke, 19, Jake, 17 and Rebecca, 15, try to keep life as normal as possible.
They held a surprise party earlier this month to celebrate Beth being discharged from hospital after 82 days of trying to bring a flare-up in her condition under control.
They are continuing to focus on their fundraising, through their Beth’s Fund Facebook page, to buy equipment.
Basildon Council is also trying to find a home better suited to helping the family care for Beth.
Mr Hambleton said: “It’s a progressive condition – she’ll never be better. When things go wrong, we just hope they sort things out, but we don’t expect them to.
“We’re just trying to get a normal daily routine.”
To find out more or to help, visit facebook.com/beths fund