text: Most mothers dream of their children's birthdays, graduations and weddings. But Jodie Barden has the heartbreaking task of arranging both her daughters' funerals, knowing that neither will make adulthood because of an incredibly rare illness. Mrs Barden, 28, is mother to eight-year-old Ella and one-year-old Chloe, who both suffer from Cockayne Syndrome and have a life expectancy of just 12. Cockayne Syndrome is a rare genetic disorder, which is characterised by a failure to gain weight, premature ageing, an underdeveloped nervous system and a small head. Scroll down for video . Jodie Barden, 28, has been forced to plan her daughters Ella, eight (left) and Chloe, one (right)'s funerals as they have rare genetic disorder Cockayne Syndrome which gives them a life expectancy of just 12 . In 2013, Mrs Barden shaved her head in order to raise money for a Cockayne Syndrome charity. She is pictured here with daughter Ella, who ages prematurely due to the syndrome . Sufferers usually don't live to see their teenage years and usually die from pneumonia. Given her children's prognosis, Mrs Barden has already made arrangements for both daughters' funerals with her husband, Luke, who is also 28. The former graphic designer, who is now the girls' full-time carer, said: 'There's no cure for what they have and there's not much the doctors can say, so we just try and keep them comfortable while they're with us. 'They'll eventually lose their sight and hearing and, when that time comes, we want to be able to provide them with somewhere where they can still have fun.' The condition causes premature ageing, so despite the fact the girls are seven years apart, they look like they are a similar age. Ella currently has a tremor, which makes drinking from a beaker difficult, and she only says words like 'yes' and 'juice'. Chloe isn't walking yet and probably won't ever reach this milestone. But while they cannot speak, Mrs Barden said they do not fail to communicate their desires through gesturing. She said: 'They are both such good fun - real cheeky monkeys.' She describes the moment she was told her children had the disease as 'devastating'. Cockayne syndrome (CS) is very rare disease resulting in slow growth in babies as well as rapid aging (a form of progeria). People with this syndrome have smaller than normal head sizes, are of short stature, their eyes appear sunken, and they have an 'aged' look. It is estimated to affect one in 500,000 children but difficult to diagnose. For CS patients who are affected at birth, life expectancy is 3–7 years. Other patients only start to show symptoms in early childhood and their life expectancy tends to be under 20 years. However, some rare CS patients live significantly longer. Individuals with CS are extremely sensitive to the sunlight and sunburn easily so they mostly stay indoors during normal daylight hours. CS is often described as a 'progeria-like syndrome'. Progeria is an extremely rare genetic disease wherein symptoms resembling aspects of aging are manifested at an early age. One of the earliest influences of progeria on popular culture occurred in the 1922 short story The Curious Case of Benjamin Button by F. Scott Fitzgerald (and later released as a feature film in 2008 staring Brad Pitt). The main character, Benjamin Button, is born as a seventy-year-old man and ages backwards; a scenario inspired by progeria. She said: 'Ella was diagnosed at Great Ormond Street in 2012 when we noticed she wasn't hitting her milestones; when she didn't start talking when we expected her to. 'I was pregnant with Chloe at the time and that's when we found out she would be born with the same disease. 'It was devastating, but once we got over the shock we decided we would do all that we could to make their lives memorable.' The disease is inherited and Mrs Barden and her husband, a HGV driver, both carry the mutated gene. They have a one-in-four chance of conceiving a child with Cockayne Syndrome, whereas the odds are usually two in a million. Now, she and her husband are trying to make the most of the time they have with their daughters, as well as their four-year-old son Alex, who does not suffer from the disease. Mrs Barden said her son is 'fantastic' with his sisters. She said: 'He's genuinely loving and has a very caring nature. 'If either of the girls drops something on the floor he will just pick it up without being asked. 'We will always be honest with him. 'The girls are always happy and never moan, they keep smiling despite everything they've been through.' She added that her husband is incredibly supportive, and the whole extended family have helped them through a difficult time. She said: 'It's a test of anyone's relationship, but luckily Luke and I have always been very close. 'We're also lucky to have support from both sides of the family.' They have collectively raised around £14,000 for charity Amy and Friends, a Cockayne Syndrome charity based in Liverpool. This was done through a series of events including skydiving and hosting coffee mornings. Mrs Barden even shaved off her hair in January 2013. And in the same year, Ella, who uses a wheelchair and walking frame to get around, appeared on a special episode of The Jeremy Kyle Show for Mother's Day. Mrs Barden said the whole family is now trying to make the most of the time they have left with the girls. Her son, Alex, four, is 'fantastic' with his sisters, she said . The reality television presenter paid for her to dress up like a princess and climb the Eiffel Tower. And last year, they flew to Melbourne and the Gold Coast in Australia where Ella swam with dolphins. Mrs Barden said: 'We met up with another family with Cockayne Syndrome over Facebook. Essex charity, Wipe Away Those Tears, is sending the family to Disneyland Paris for an Easter holiday. In the meantime, Mrs Barden is taking on a Tough Mudder event in September. Her ambition is to raise enough money to kit out a special sensory shed at their home in Witham, Essex. She said: 'The sensory shed is basically just a big playhouse in the garden where they can interact with twinkly lights and feel different objects.'
target: Jodie Barden's daughters Ella, 8 and Chloe, 1, have Cockayne Syndrome .
  This rare genetic disorder means they are unlikely to live to be teenagers .
  Mrs Barden, 28, has faced heartbreak of planning her daughter's funerals .
  Family is now trying to make the most of the remaining time they have .