butterflyWhen Ella Barden was just 9 months old her parents knew something was wrong. She wasn't growing as she was supposed to, but numerous tests over the years failed to diagnose her issues. Then finally in December doctors pinpointed the issue with the now 6-year-old: Cockayne Syndrome.

According to her Facebook page, it's a premature aging syndrome, and it's deadly. Most people with it don't live to see their teenage years.

It's hard to imagine the devastation her parents must have felt knowing that her life was likely more than half way over. Knowing that there's currently no cure. But as bad as that was, things then got worse.

According to the Braintree & Witham Times, about three weeks later, just before Christmas, her mother Jodie Barden got another devastating blow. The unborn daughter she was carrying, who is due in April, also has the syndrome.

So now two of the couple's three children (they also have a 2-year-old son who does not have the syndrome) will have this deadly condition that will surely only deteriorate ever year. It's beyond unfair that one family should have to face this much pain.

How do you even let yourself love these children when you know they're going to be taken from you so abruptly? I'm sure you just would -- that's what parents do. But my God, it's got to be hard. Jodie said:

We have to take it day by day and can't look too far in the future as it is just too upsetting and we have got to try and keep positive. Somehow Alex will have to deal with losing two sisters.

Despite knowing what she knows, Jodie has no intention of terminating the pregnancy either. She told the paper:

I would still have to give birth to my child and I would rather know I had given my child happy memories and given her a chance to love life and live it happily and to enjoy life. It is not going to be easy in the end and I have thought about that lots, endlessly,but at the end of the day I have still got to bear her either way.

In order to raise awareness of the syndrome and raise money for research and a bucket list of activities Ella would like to complete, the family has set up Ella's Butterfly Fundraising Page on Facebook. If you're looking for a cause to donate to, this certainly seems like a good one. 
 

Have you ever heard of this syndrome? Can you imagine having two children with it?

 

Image via bobrayner/Flickr