Sometimes You Have to Wonder…

A story in today’s Arizona Republic caught my eye. Actually it was another story on the front page about pediatric melanoma rising drastically that caught my eye, which led me to actually reading the paper and seeing the second story.

The first story was full of the usual fear-mongering in the end. It was about a 5-year having surgery for melanoma. While I feel for the child and her family, I can’t help but wonder if they slathered sunscreen all over that poor child every time she stepped outside. I find it amazing that the increase in skin cancer correlates with the increase in sunscreen/sunblock use. And yet they still blame the sun and tanning beds. Just once I’d like to see them also mention family history (genetics), hormones, or perhaps the sunscreens they all promote. But no they don’t.

Before you all think I’m a raving idiot here. I speak from personal experience (actually with both these stories). I’ve had melanoma. I was 8 months pregnant with my second child when it was discovered that I had level 4 melanoma. This was back in 1981. Here I am 27 years later telling you about it.

Of course, my first question then was “do I have to stay out of the sun”? Now, I wasn’t a sun worshipper then [didn’t have time to be] but I did love the sun and the sunlight. I was informed that it wasn’t the sun in my case, but my hormones.

But this post isn’t about me or melanoma. It is about how parents of children with some form of disability has to beg, borrow, fight to get any kind of help for their child. Even with health insurance, these parents are forced to jump through extremely high hoops and try to bend totally inflexible ideals to get any help. In this I too have experience as my first-born was born physically different (by general standards). If you are a hard-working, tax-paying citizen/legal resident in this country, when you need help or a little assistance this country suddenly doesn’t care to know you.

From the Arizona Republic:

4-year-old just wants to be like others

Cathy Humphrey isn’t asking for a lot. She wouldn’t ask at all but, you see, it’s for her daughter.

She wants Maria to have a chance to walk. For that to even be a possibility, she needs $5,000 in equipment, but the state has turned her down. The reasons seem to change with every denial.

Basically, it comes down to this:

State and insurance officials don’t think Maria Humphrey will ever walk. So why bother?

Maria is the only child of Cathy and her husband, Manny. She was born four years ago with hydrocephalus. Since then, the hits have just kept coming: cerebral palsy, scoliosis, seizures, severe delays in every aspect of her life. Doctors have told them that their daughter will be deaf and blind, that she will never be able to feed herself or walk.

With every blow, the ceiling on Maria’s life drops lower. Yet her parents don’t easily accept such limits, as parents never should. They believe their daughter can do more, if given a chance.

In fact, she already has.

The will and determination of children is amazing. I’m not surprised this child is disproving the doctors at all. And huge KUDOS to her mother for nurturing her determination rather than just accepting the fate the doctors have bestowed upon her. These children are the lesson that shows us to never say “never”.

“We’ve been told she’s going to be blind her whole life, she’s going to be deaf her whole life, she’ll never drink from a bottle and she’ll never walk,” said Andy Humphrey, who works with his niece two days a week. “So far she’s disproved three of those and she’s working real hard on disproving the walking one.”

For that, though, she will need help. Last year, the family requested a walker and a stander through Care1st Health Plan Arizona, an insurance company that contracts with the state Division of Developmental Disabilities. Cathy sent in letters from Maria’s physical therapist and several doctors explaining that having the ability to stand could prevent further deterioration of her body, explaining the importance of taking steps and how she will need this equipment if she is ever to walk, explaining that the sooner she is upright, the better.

Reach Roberts at laurie.roberts@arizonarepublic.com or 602-444-8635. Read her blog at robertsblog .azcentral.com.

Read the FULL STORY here.

You have to wonder why, when someone shows such determination, the agencies designed to help in these cases don’t even try to help. I understand about being careful and not abusing the system. I understand they can’t help everyone, but when you have a situation where it is not a lifetime commitment to help that is needed but an amount of money that won’t come to more than $5,000 for a couple of pieces of equipment that could in fact help this child learn to walk……….is that not worth the investment? With a little help now this child could, and probably will, grow up to be a fully productive member of society. $5,000 now to help her learn to walk on her own for the rest of her life, or do nothing and then get requests for the rest of her life for electric wheelchairs that cost a good $20,000 and up and depending on usage end up needing replacing every 5-10 or so years? Seems like a no-brainer to me to try to help a child grow normally and be like her peers. Especially a child that has already made liars out of the doctors predictions [which I’m sure they don’t mind]!!

I understand rules and regulations also, but come on, let’s face it…………you also need to look at these cases on an individual basis. This one-size fits all mentality that government and charitable organizations have is beyond ridiculous. While you can’t help everyone, making someone already stressed out from years of caring jump over high hurdles without looking at the case individually, is just flat-out stupid in my opinion. And how rude and cruel to make such a person have to beg for help to help their child.

For more information on hydrocephalus see HERE, and HERE, and HERE, and HERE.

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~ by swfreedomlover on July 23, 2008.

One Response to “Sometimes You Have to Wonder…”

  1. It is very weird that children are being diagnosed with middle-aged adult problems like high cholesterol and melanoma, even with precautions taken.

    And it is sickening that amid all this fear-mongering, children who desperately need real help can’t get it! Too bad the drug companies can’t find a way to make money from little Maria’s problems.

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