25 February 2010

This is Layla


This is Layla Grace Marsh. She's a beautiful two-year-old in Texas. She's also got stage four neuroblastoma. Her mom's very active on the web and I was asked to write this blog post by Carmen Natschke from Decorating Diva and Christine Skaley from Pillow Throw Decor. Both of those women are terrific friends of this blog and so I want to pass along a story from them.

Layla was an otherwise normal baby until she developed abdominal pain at about 15 months of age. Her parents thought they were dealing with routine digestive problems but found out instead that their baby had stage four cancer. I cannot imagine how devastating such news would be.

Layla's mom is Shanna Marsh, who wrote the website Baby Wears Prada. Since Layla's diagnosis, Baby Wears Prada has morphed into a Facebook Fan Page. Shanna and her husband Ryan have also been keeping up the website Layla Grace. Their site serves as a way for them to document their daughter's life and as someone who writes into the ether on a daily basis, it's got to be a tremendous relief to have it as an outlet for their thoughts.

On a day when congressional leaders and the President of the US met to discuss the pressing need for healthcare reform, it's instructive to note that Layla is dying. Her family will not only have to deal with the death of their child, but also the medical bills not covered by their insurance. At this point, those bills are in excess of $100,000 and climbing.

Christine is coordinating a creative fundraiser through her blog and you can find all the details there. Please follow the link over to Pillow Throw Decor and count your blessings while you're waiting for the page to load.

8 comments:

  1. Such a sad story.... nobody should get cancer, especially not little children.

    Cancer sucks.

    Kelly

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  2. Well unfortunately, people do get cancer. That in itself is a tragedy. But to double and triple the tragedy by bankrupting the survivors is as immoral as it is preventable.

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  3. When my daughter was born she had "something wrong with her". After about the time she was about a month old it became obvious that there was something wrong with her head and that it wasn't growing properly. After lots of tests and weeding out likely problems (including hydrocephalus). Turned out that the sagittal suture of her skull had fused together before she was born so that her head couldn't grow any wider. To make a long story short.. at 4 months of age, she had to have pieces of her skull removed to allow it to expand normally.

    The point of my story is this: No matter how hard it was to have my tiny little baby having a potentially life threatening surgery ... I felt so lucky. I slept that whole week in the hospital room with her and 4 other babies and their moms.. and at the end of that time we were the only ones who got to go home.

    I find it tragic beyond belief that due to location, our experience with Em cost us no money beyond some minor travel expenses while other people with sick children are left with massive bills to care properly for their loved ones. Thanks for sharing this Paul.

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  4. Thanks for that Nim. I cannot understand why revulsion at this sort of thing is not more widely shared by my country men and women. What kind of a society routinely slams people twice? -- first a tragic illness and then the bankruptcy that follows. Ugh.

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  5. Thank you thank you Paul for sharing this with you friends and followers. Layla Grace has reminded me that I still owe God big time for two lives he spared for me.

    Next week Decorating Diva and I will be assembling a list of items for sale and Giveaways from many handcrafters and designers. ALL sale proceeds being donated to the Layla Fund. There's going to be spectacular girly "Layla pillows", Layla dresses, prints, stuff and more stuff. If I may ask you, please pass on for anyone interested, following @payitFOURward is an easy way we can let people know where they can buy these donated items.

    Thank you kindly dear friend
    Christine

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  6. There is tragedy, and then there's adding insult to it. Australia has a public health insurance system, which I understand is called " Socialism!" by some in the USA. What our system means is that nobody goes into debt because their little girl is dying of neuroblastoma. Gosh, "socialism" is terrible.

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  7. Oh don't get me started. The health care delivery system in the US is immoral. There is no other word for it.

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