Portland mom uses Kickstarter book project to fund son's cerebral palsy treatment

Kickstarter has become popular as a platform for raising money for creative projects, and now a Portland mom has put it to a double-pronged use: selling a children's board book she wrote to raise money for treating a son with a disability.

Shasta Kearns Moore, a former journalist and current Oregonian News Network partner, blogs about her identical twin boys -- Malachi, who has cerebral palsy, and Jaden, who does not, and who turn 2 today -- at OutrageousFortune.net. She recently answered questions by email about her Kickstarter project, a board book called "Dark & Light: A Love Story for Babies," and shared tips for parents of children with disabilities. On 'Dark & Light': "I was laying down to take a nap and thinking about my kids' favorite books -- which were filled with very simple silhouettes. I knew from studies about babies preferring black-and-white pictures that these images were far more interesting and instructive to them than something more complex, like watercolors. But because the books were so simple, and they wanted them read over and over again, I was extremely bored. So in that dreamy space before sleep I started thinking about black and white and how they could be personified to tell a larger story about difference and acceptance while still using very simple images. 'Dark & Light' was the result."

On the Kickstarter campaign: "I just didn't have the time to query a million agents/publishing houses. I needed money for my son's treatments NOW, so, I thought, hey, maybe I could marry these two ideas together with a Kickstarter. I'm simply amazed and overjoyed at how successful that idea has been."

The campaign, which ends Wednesday, has been covered by media outlets ranging from the Register-Guard in Eugene, where Kearns Moore grew up, to the Huffington Post. Kearns Moore initially hoped to raise $5,000 but blew past that goal so quickly that she is now seeking $10,000 to pay for an editor and babysitter to develop a sequel to "Dark & Light."

On having a disabled child: "My top piece of advice for parents who discover their child has a disability is to find (or make) a community of people going through the same thing," Kearns Moore said. She credits her blog with connecting her with other moms of children with cerebral palsy as well as other mothers of multiples with CP. "In our society," she says, "disability is often put as far out of the public eye as possible so most people see it as scary and abnormal. But when you start to know a bunch of other people living with it, too, you realize disability IS normal. It can be hard and sad -- sure -- but it's not actually all that unusual." On getting the best treatment for your child: "It's a very hard row to hoe. But just keep in mind that you are the expert on your child -- this means you have to constantly evaluate and reevaluate treatment plans, but it also means that your Truth is almost always going to be more accurate than a so-called expert's Truth," Kearns Moore said. "Go with your gut -- if only because if you do follow their suspicious advice and it turns out to be wrong, you'll feel even worse." On finding money for a child's treatment: "(T)he long and short of it is that the electorate doesn't seem to value spending money on sick kids anymore and insurance companies are obligated to spend as little as possible on anybody. As a result, any private grant programs often have massive waiting lists," Kearns Moore said. "The only real avenue left is fundraising and it's not easy. ... What's really hard about fundraising is getting to the point where you accept that you need to ask your friends for money."

"To be successful you really have to open yourself up emotionally and let everyone see your pain," she said. "People these days are very savvy and very cynical -- they can smell insincerity a mile away. But they also love a good story. Find out what your story is and tell it." On parenting the sibling of a child with a disability: "Read 'Being The Other One,' by Kate Strohm. Strohm's brother has a disability and the insights she had taught me a lot about what sorts of emotions and reactions JJ (Jaden) will have as he gets older. Some of it is the same as any sibling issues, such as jealousy and overprotectiveness, but the disability makes them a little different and some things unavoidable, such as spending more time with the special needs one."

A few pieces of advice Kearns Moore cites from "Being the Other One":

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Portland mom uses Kickstarter book project to fund son's cerebral palsy treatment