Portland mom sells book on Kickstarter to fund son's treatments
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PORTLAND, Ore. – Shasta Kearns Moore said she felt like she ran out of options just a few months ago.
The Portland mother of twin boys was fighting to afford treatment for her son Malachi’s cerebral palsy.
“My husband and I thought we were going to have to do this alone,” said Kearns Moore. “We thought we’d have to drain our savings.”
Malachi, who can neither sit nor stand without help, started an effective, but expensive therapy treatment a few months ago.
“Now he can roll over. He can crawl. He can crawl on his elbows,” Kearns Moore said.
To help pay for their son's treatment, her husband suggested she turn the laminated cards that she read to her sons into a book that others could buy.
The result was "Dark and Light: A Love Story in Black and White."
“The primary inspiration for dark and light was his primary form of treatment,” she said.
Kearns Moore submitted an online pitch on Kickstarter.com.
“And within a week and a half, we met our goal. It was amazing,” said Kearns Moore.
Now she’s sold a few hundred copies, and counting.
“People are always telling special needs parents ‘oh, you’re so brave,’ or whatever,” she said. “You do what you have to do. It’s not an option for me to let him not progress and be a self-fulfilled, empowered little boy.”
So glad to hear this little darling is improving. It would be so hard to 'not' watch your child develop or see those milestones we fall all over ourselves watching. What a great family!
Why did not these folks enroll in the OHP?Â
 @bonedProbably because they make to much money. This is why some think that the Health care plan of Obama's is a ruse. People are still not getting what they need.
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This family probably falls in the area where they make a few dollars over the limit, and don't make enough on the job to cover the bills. the Affordable health care plan was suppose to cover this gap.Â
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I am not sure what the treatment for Cerebral Palsy is. But I do know that How the System works, or does not work .
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Their son may not Qualify to even get SSI as the family may make to much money to get him the SSI, that would kick in some Health Benefits , but perhaps seeing how the family does not qualify for SSI because they make to much leaves the second option, attempt to get him on SSA, In which would be difficult as one has to be a disabled adult child to get those . When this occurs there is a lot of issues that crop up as well. Adult Children 18 and older wind up getting books made for, Yeah you guessed it retirees. 18 years old and on AARP, problem is these have limits on what one can do. There is Also Humana and other sources, but they only cover part of the costs.
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In essence to qualify for OHP, I am guessing one has to qualify for something like SSI or SSDI. This is where one needs to get an attorney and fight like hell.
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Trust me I know, I been on SSA then changed over to SSI, then Switched back to SSA.. and It has been one Hell of a Ride. Don't ask me to explain how that all happened, It is a very long story. I am just speaking from experience.
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In Order for this family to qualify to get what they need, they will have had to drain there accounts, lose a job, Then they might get help, but then again if they have a mortgage, they would forfeit and lose it all. The other Option if the book thing does not work is to go for broke and declare
bankruptcy.
Leaving the tax payers to clean up the mess.
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I thought Obama's Healthcare plan was to help people like this family.
Some change, and I am not speaking as a Democrat or republican, I am speaking as a human being.
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I just hope that this family can use its books to get quality care for there son.
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 @lee986321  @boned Actually, OHP did, or possibly still does, a lottery draw 1 to 2 times a year for coverage. This is for people who do not have underage children and are low to no income. I actually got picked  I take care of my Dad who is elderly and disabled. I gave up my job to do this so therefore have no income of my own anymore. I read about the lottery draw online and submitted my application. I was picked and very luckily so. I had major medical issues last year requiring several emergency hospital stays and several surgeries. The insurance is the standard OHP so some things are not covered but, for the most part, it has been a godsend for me. I would like to start working part time soon and what is nice is that OHP offers where you can get better coverage if you pay a premium based on your income level. Like "real" insurance.The only problem with having OHP is the way you get treated by some medical professionals. They see OHP and you really do get treated as a 2nd class citizen even if you aren't a leech. I paid into the system for 20 years before needing any help as my parents also paid before my Mom's death and my Dad's disabilities. However, that is not seen. OHP has a pretty bad rap because of all the leeches on it. However, more "normal" people are on it now than used to be.
 @Kymberlie2873 It is folks like you that need it no matter what!! There is obviously too much false information out there that some folks on this thread feel they are experts on the subject.  Greed from health-care 'professional's' has not helped and the latest is from the dental community.  I took a major cut-in-pay as a 'professional' and did not take it out on folks, but then I do not own two homes, two housemistresses, three expensive cars and more to support at insurance companies expense = citizens...
 @Kymberlie2873 Hope it works out for you & your dad. FYI, "lee" is self-described as one of the leeches you refer to. Just sayin...
 @boned Why do you assume they didn't, or that they don't have private insurance? And should we decry them for *paying for what they need* if they can?
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I followed the link to their web site, where it says (on the about page): "... and though we have found a modality of treatment that we find very effective â the Anat Baniel Method â it is not yet covered by insurance and very expensive."
 @kyrielle And your point is? Some folks know nothing about the OHP and original story leaves too much for speculation by folks like you and me. No mention of a spouse, no mention of prior coverage and even though, if the family income is less than $70,000 they can still sign-up for the OHP that has waivers and covers medical, optal, dental & Rx's at your expense...
 @boned How do you know the therapy is covered by OHP? I'll bet it isn't. Many Republicans are quick to assume there's an easy way to obtain the proper and most effective treatments. That's rarely the case when it comes to serious problems. Medical expenses are the #1 reason that middle class American families go bankrupt. Thank goodness Obama got rid of the pre-existing condition clause. What a nightmare that would have been for this family.
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Hope they sell a lot of books, and I wish their son all the best with his therapy!! =)
 @badcat  @boned Yet another "experimental" treatment that appears to work -- at least right now for this child. Kuddos to Mom for having the skill and ability to work around the problem in the system.
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Yep, that pre-existing clause was really nasty and held back a lot of people -- it just isn't until you're in one of those situations that you hear about others also having to deal with it.
 @CTWU  @badcat  @boned Couldn't help but catch the tone on 'experimental'. Sometimes they fail. With less than desirable outcomes, to boot. Other times.... My twin nephews underwent experimental stem cell transplants for a rare chromosome defect that was rapidly killing both of them. We lost one and the other has made a rapid recovery.