Writing for his life
- Nancy Townsley
- Portland Tribune - Features
Lents resident Shasta Kearns Moore's new 'love story for babies' could help her son battle cerebral palsy
As they approach their second birthday, napping in their cribs or catching a few winks in their car seats is one of only a handful of things Jaden and Malachi Millard do exactly the same way.
While Jaden James, nicknamed "JJ," has developed normally for a premature twin, his brother Malachi lags behind in many areas.
"JJ runs and climbs, but Malachi cannot even roll over consistently," says Shasta Kearns Moore, 28, a Lents stay-at-home mom to her young sons, who were born 10 weeks early on June 26, 2010, at Oregon Health and Science University.
She and her husband, Matt Millard, 33, a software trainer at OHSU, learned a month after the boys' early arrival that Malachi had sustained an oxygen deprivation-related brain injury.
Doctors eventually diagnosed the dark haired, blue-eyed tot with extrapyramidal quadriplegic cerebral palsy. Because he still cannot crawl or stand by himself, Kearns Moore says it is generally considered unlikely he will ever walk independently.
"Malachi just doesn't seem to have the ability to 'write down' the things he learns and build on them like JJ does," she adds. "It's like every day he starts over again at square one."
Now Kearns Moore is turning to her writing skills -- she's a former journalist -- to raise money for Malachi's continued treatment. She is the author of "Dark and Light: A love story for babies," a children's book being offered through crowd-funding website Kickstarter.com, to help raise at least $5,000 to pay for Malachi's therapy.
Dealt a 'rough hand'
For Kearns Moore, it took many weeks filled with tears, frustration and guilty feelings to make peace with Malachi's condition. Millard has had a harder time adjusting to the idea that Malachi could face a life with significant challenges.
"I would never have wished for my child to have to go through this kind of pain," he says.
Kearns Moore, who blogs about her experience raising twins at OutrageousFortune.net, is a determined, pragmatic and ferociously optimistic mom who devours everything she can read about the newest therapies for Malachi's form of CP. She identified one of the great equalizers for Malachi and JJ when her sons were tiny: books.
"Both of them love to read, probably because we started with them very young," Kearns Moore says.
They particularly like books illustrated with "very simple silhouettes and almost no text," she adds.
That's how "Dark and Light: A love story for babies" was born. Designed as a simple board book aimed at very young children, it's the first in a planned series of three.
"I thought of a story that involved difference and my fear that Malachi will be shunned for his," Kearns Moore says.
She'd love it if the book raised enough money to pay for Malachi's primary form of therapy, the Anat Baniel Method, which has strengthened the neural connections in his brain enough to change his muscle tone and improve his eating capabilities.
Kearns Moore is meeting that goal through Kickstarter.com, which supports entrepreneurial projects of all kinds across the nation. In her initial effort, she raised more than $5,000 by attracting individual pledges.
The outpouring of support overwhelmed her.
"Just having people stand behind us and say, 'Life dealt you a rough hand, but we're going to help you make something awesome out of it,' means more than I can ever express," Kearns Moore says.
Create a miracle
The family traveled in October to San Rafael, Calif., where the Anat Baniel Method therapy center is headquartered, and again in May. They plan to head south again on July 9. Each trip costs about $3,000, but Kearns Moore and Millard are convinced this is the therapy that best fits Malachi's profile and special needs.
"It seems to align with the latest in neuroscience, particularly the idea that the brain is capable of remarkable and rapid change," said Kearns Moore. "It has done things for Malachi that traditional doctors have said is impossible."
Profits from sales of her first children's book will go exclusively toward Malachi's medical expenses, Kearns Moore says. Still, her aspirations for the book series go beyond her own family.
"My secret dream is that a whole bunch of people will decide to come together and create a miracle where so much money is raised that we can start a nonprofit to offer ABM to other children," she said. "I would be thrilled."
REACHING HER GOAL
By June 12, Shasta Kearns Moore's Kickstarter.com project had garnered 169 backers who'd pledged a total of $6,847 - and counting - to get her children's book into print. To learn more, visit www.kickstarter.com/projects/1718096956/dark-and-light-a-love-story-for-babies.