Ella & Chloe

We are honoured to be able to support The Barden Family, our 87th CCF family.

Jodie, Luke, Ella, Alex, Chloe and Mia are such an inspirational family, but sadly they will only be a family of 6 for a short time. Both Ella and Chloe have been diagnosed with the life limiting illness Cockaye Syndrome (CS), which means they both only live a short life.

CS is a recessive genetic disorder, where the DNA cannot repair itself and unfortunately leads to a shortened life expectancy. Ella & Chloe will deteriorate over time as their bodies age rapidly and lose any skills they may have such as walking, talking, their hearing and their sight, eventually leading to their body shutting down. As yet there is no cure for CS.

Jodie gave birth to Ella in 2007 after a normal pregnancy and delivery, it wasn’t until she was 8 months old that Ella stopped gaining weight and health visitors became concerned that she wasn’t reaching some of her milestones like her communication, crawling and walking. Ella was referred to a paediatrician and a geneticist, this is when she was referred for numerous tests and scans along with weekly hospital appointments some being at Great Ormand Street, sadly the family received no answers.

In 2010, when Ella was 4 years old, Jodie and Luke welcomed their son, Alex,  into the world becoming a loving family of 4. Ella continued to have issues and without a diagnosis all the family could do was to deal with each symptom when they arose. It was at this point where Jodie had to give up her job to take care of Ella and ensure she attended the many appointments and hospital stays that she needed, Luke worked away and was only home at weekends.

In November 2012 Jodie took Ella to an appointment at the Genetics Office where she was asked if Ella sunburnt easily to which Jodie answered yes, so badly that Ella had to be taken to hospital once on holiday from wind burn that her whole face swelled up, and that she had to be kept out of the midday sun and sun cream being applied religiously. It was on this information that the consultant advised they were going to test Ella’s bloods for CS. On the 14th December 2012 Jodie and Luke received the devastating news that Ella did have CS and their whole world fell apart now knowing this and knowing this illness comes with a short life expectancy. This was not the only heart breaking news that they received as Jodie was  over 20 weeks pregnant with their 3rd child and as CS is a recessive genetic disorder it is highly likely that their unborn child could also have CS.  Jodie and Luke travelled to London for tests to be carried out and 3 days later it was confirmed that their unborn child did have CS.

At 27 weeks pregnant the family were given the option of a termination due to the nature of the condition, which they did not agree to. Ella having already bonded with the baby and with knowing her fate they wanted to give the baby the best life possible. Chloe was born in April 2013.

Having thought long and hard about another child, a sibling for Alex to grow up with when Ella and Chloe are no longer here, Jodie and Alex fell pregnant with their 4th child again they had a genetic test done this time they received the news that their unborn child was fit and healthy. Mia was born in 2018, completing this gorgeous family of 6.

Ella and Chloe both go to a Special school, both are wheelchair users and cannot walk unaided; Ella has few words whereas Chloe has a better vocabulary, understood more by people who know them. They both need 24/7 care, they need help to get around, to eat, to go to the toilet, both girls are tube fed throughout the night.

Luke has continued to work away during the week as a HGV driver, Jodie has struggled to find employment due to being unreliable as she needs to be available to care for Ella and Chloe and attend the many appointments they have each week which can be home or away in London. Jodie set up her own wedding planning business to attempt to bring in an income and to allow her to be her own boss and work the flexible hours needs to. She launched her business in February 2020 but unfortunately the Covid-19 Pandemic hit and she was forced to put her business on hold as her and her family needed to shield to allow the girls to be as safe as they could be.

Jodie only being able to work limited hours has had such a massive impact on the family financially, their everyday living cost have not changed and still need to be paid, which as a family they are struggling to do. Having reviewed this application our Trustee’s did not have to think twice about supporting this inspirational and loving family, and it was agreed that we would pay the mortgage and energy bills for the next 4 months up to the value of £4,000. This is a big help and a big relief to the family who now have breathing space and no longer have financial worries for the next 4 month.

We have only been able to do this because of 2 brave Angels, Charlie & Carter, the name’s sake of our charity. These brothers were sent to this world to make a difference and with the help of their inspirational Mammy and Daddy they have certainly done just that.

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