The Working Mom by Kay Luna

Sharing Fiona’s story

Monday, March 26th, 2012 10:06 am

Photo from

When a story popped up on my Facebook feed about Paxton and Dee King’s 9-month-old daughter, Fiona, I couldn’t look away.

The story in Wisconsin’s LaCrosse Tribune explains how the couple will watch their baby girl slowly fade away.

“The baby will stop giggling. Her arms and legs will stop moving.

And then Fiona will die, probably before she turns 2.”

Little Fiona has a rare genetic disease, called GM1 gangliosidosis, which already is shutting down her body. There is no cure.

The disease means she can’t break down fat lipids in her cells. As the lipids accumulate, they kill the organs, the story explains.

“The first signs usually show up in the liver, and then Fiona’s nervous system will begin to fade,” the story says.

“It’s two years of watching your child die slowly,” Paxton said.

“It’s devastating,” Dee said.

After reading this, and looking at the photos of the family posted online with the story, I felt compelled to post a link on my “Working Mom” Facebook page, too.

A few hours later, I got a Facebook message from the baby’s father, thanking me for sharing Fiona’s story — and telling me about his connection to the Quad-Cities.

He visits Davenport every couple of weeks for his job with the parent company of Texpar Energy, which he says is “a heavy fuel oil and asphalt storage facility along ther iver on the Buffalo/Davenport border.”

He likes to read the Quad-City Times when he can, too, he said.

Sometimes, we make it easier in our minds to hear such sad stories like Fiona’s, imagining they’re happening to faraway people in faraway places.

But this one is happening to the baby daughter of Paxton King, and he’s right here with us.

What can we do to comfort him?

Honor his wish, which he wrote about in his Facebook message:

“I’d love for Fiona’s story to spread.”

3 Responses to “Sharing Fiona’s story”

  1. Tohr Says:

    My husband went through this and after undergoing an experimental, high-risk clinical trial, he is fine. He takes some medications and some enzyme supplements, but in general she has lived a normal life after the age of 3 since overcoming GM1 gangliosidosis. So it can be done, best of luck!

  2. Tohr Says:

    Oops, typo – “he” has lived a normal life (I’ll hear about that one from hiem!) :)

  3. Paxton Says:

    This is Fiona’s dad – I’d love to learn more about how he’s overcome the disease. I’ve never heard of anyone overcoming GM-1, nor have my daughter’s physicians.

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