Pregnant Woman Learns Her Unborn Baby & 6-Year-Old Daughter Will Likely Die Before They’re 12

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

baby prep, complications

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early... earlybird11

We can only pray for great.medical strides !!! God bless them

PRIMA487 PRIMA487

How does one respond to a statement like how do you let yourself love them. I get it , but it was worded badly. An earlier post today questioned a mothers love for her serial killer son and could you love your child if they were murderers. I think all answers were yes they could and would. But to ask the pretty much the same question about innocent lives... If anything I think how could I keep away from them I'd be on love overload

fleur... fleurdelys3110

I've never heard of this particular syndrome but I have heard of progeria, which is also an early aging disease. 5 year olds look like small 90 year olds. It's very sad and rather frightening.

Renee... ReneeN1979

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.

hexxuss hexxuss

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.

femal... femaleMIKE

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.

vandm... vandmsmom

This is so sad I cant imagine how devastating this must be for the parents

nonmember avatar Laurie Burns

How to you let yourself love these children?! I have no more control over the love I feel for my children than I do the beating of my heart. I also loved them before they were born and any amount of time that I have with them is a blessing! True love is unconditional!

nonmember avatar martha Boehm

it is an admiralble thing she has decided.I lost a baby girl at 3 and a half months & it has been devaststingly painful..5 yrs later.....I used to wonder which is worse...having lost a grown child(who had years of memories w/ you or a newborn who was deprived of a life at all......i see it like .there is no difference.It hurts all the same.however i believe we choose our destiny before we're born and for whatever reason....she only had 3 and a half months left to be earthbound.God loves chidren in particular for a reason.those girls will be loved and trully missed.looking at the fact that they're special cherubs called to this earth for reasons we can't fathom......is the only way this makes sense to me.God bless their family.for they will receive the most pain.Remain proud of yourselves and cherish every moment of their time shared. bless your hearts

nonmember avatar Shannon Palmer

I could/would love those children all the same. If they did not have this horrible disease, would that make a difference in how they were loved? God works in mysterious ways. We don't always understand why bad things happen to good people, but they do. When those children are taken from their earthly parents and go to be with their heavenly father, they will be better off than any of us; we should be jealous because they get to go be with God.

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