When 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.
Have you ever heard of this syndrome? Can you imagine having two children with it?
Image via bobrayner/Flickr
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Comments 17
It's good woman who gives birth knowing her baby only has a few years, or decades, to live. That woman is giving that child the blessing of experiencing life, despite knowing the pain she'll feel later on.
I think her reasoning is valid: quality of life vs. quantity of life. If the life in her were to have no quality to it at all, then that'd be another story.
another way to look at it is that we are all terminal. We don't know when our day will come.
I pray that they will find a way to reverse or slow down this disease. This is a horrible situation.