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Jodie: You want to cuddle them and never let them go

Jodie, described her emotions at the prospect of losing her daughters.

It’s heartbreaking, absolutely heartbreaking because you never think it’s going to happen to you. You never think you’re going to lose your children. You never think you’re going to plan their funeral before you’re worrying about your own. It’s heartbreaking. You want to cuddle them and never let them go. It does make you appreciate life and do as much as possible.

– Jodie Barden


Jodie: Heartbreaking to go through this twice

Only two babies in every million are diagnosed with Cockayne Syndrome. Jodie Barden's daughter Ella has the condition, now Jodie has discovered her unborn child carries the gene which causes the illness too.

Jodie said: "Obviously devastated with Ella they offered us a test to have this one checked. It’s been a different pregnancy and I thought it’d be a healthy baby and it just knocked us out sideways and it was heartbreaking to go through that again."

Jodie Barden: Every second is precious

Ella Barden, 6, and her brother Alex who does not have the condition

Ella Barden, 6, has a rare genetic disorder which means she is unlikely to live beyond the age of 12. Now for Jodie and her family every moment with her is special.

Jodie said: " When we first found out it was upset, anger, why Ella? It’s so unfair.

"Every second now it’s precious. We are still sending her to school because she loves school and we want to keep it as normal as possible. Every second, every minute with her is so precious now.

"It always has been, it always is with your children but even more so now. We don’t take any of our time together for granted. We want to give her happy memories and look back and say we gave her the life she should’ve had.

"There’s a few things we’d like Ella to do, memories for a start. We want to make memories now, happy memories, loving memories and fun memories. We know there’s things she likes and we want to fulfil it for her before she gets too ill."

Mum's heartbreak for her children

Jodie Barden: Daughter and unborn child have rare genetic disease

Jodie Barden's six-year-old daughter Ella has a rare genetic disorder which means she has a life expectancy of just 12.

Now Jodie, 27, from Witham, has just discovered that her unborn child, also carries the gene for Cockayne Syndrome.

It's a life-shortening, genetic disorder. Most sufferers die before they become teenagers. The syndrome affects two babies in every million and is incurable.