Issues I Care About Archives

Mysteries of the Blogosphere

blogosphereYou read all these “How to be a Successful Online Entrepreneur” guides, and they all talk about:

  • Being organized and managing your time online
  • Maintaining a constant “presence” and being “visible” to your list
  • How easy WordPress (and blogging) is

Bah. Humbug, I tell you!  Myths, all myths!

I admit to being too busy to make the time I should for posting, lately – but it isn’t a time management issue – it’s those Unexpected Web Glitches that mess up my perfectly organized schedule!

Today I checked my blog and discovered that in Google Chrome, my blog sidebars had disappeared. Since this is my main business site, I spent an unscheduled 40 minutes testing and re-testing it, checking all my settings… and nothing seemed amiss (but it still wasn’t displaying). I was using the latest version of WordPress; all my widgets (the ones that should have been displaying in the sidebars) were internally present and accounted for; and I hadn’t done a single thing to the blog setup since the last time I saw it displaying correctly.

I have to say, I really like Google Chrome. It’s the perfect browser if your only option is a limited-memory Turbo Stick wireless plan (Firefox is such a megabyte hog, I’ve given up on it). But Chrome still doesn’t support extensions very expertly, and it apparently still hasn’t ironed out several little glitches and bumps.

Chrome, WordPress or User: Which to Blame?

I don’t know if my Disappearing Sidebar issue was a Google Chrome thing… or some WordPress error. After 40 minutes, I gave up in frustration and wrote this post (which originally concluded differently, since the sidebars still weren’t showing up) …but lo and behold, when I previewed it just now, the Disappearing Sidebars suddenly…

came back.

YARRRGH!

(Why Me, O Lord? I needed that 40 minutes!)

Of course, the reason I’m right to the wire, instead of having a comfortable leeway, is because last week, I lost 2 entire days after a site I had to research on behalf of a client project blessed me with an incredibly nasty virus. I had to Stop the Presses and have my entire computer overhauled, to eradicate all viral traces and repair the damage (which cost almost as much as the project earned).

And I know, I know… I should have stuck to my Perfect Schedule. But the reality is… it’s a harrowing thing, when half of your site suddenly goes AWOL!

(Ya know, they don’t tell you about these “little” time-wastin’ glitches in Entrepreneur Skool…)

Think I’ll go drown my sorrows in a nice hot cup of  Fair Trade Yukon Dark Roasted. (How do you deal with these sort of internet monkey wrenches?)

When Rare Diseases Aren’t So “Rare”…

little-kyleWhen fellow copywriter Melissa Ingold got the news her baby Kyle didn’t have cancer last October, she and her husband Jeff were relieved.

Until they found out that Type III Gaucher Disease is considered terminal, with a 0% survival rate beyond age 10.

Melissa wouldn’t wish illness on any child, of course – but she couldn’t help finding it bittersweet when she read an American Cancer Society article stating that 97% of infant cancer patients achieve complete remission.

She says on Kyle’s blog: “So is it any wonder that I wish Kyle’s diagnosis had of been cancer, that he had of been given a 97% survival rate? And because he would have been diagnosed at 3 ½ months old, they would have caught it so, so early. I mean, by now his treatment could have been done and over with, he could be in remission and living a normal life.”

When the Ingolds were told it was Gaucher’s, there was a brief period of hope while they waited to hear if it was Type I, which usually sees its victims survived to adulthood.

It wasn’t. Kyle had Type III.

What Is Gaucher Disease?

You don’t “catch” Gaucher Disease. It’s genetic. It’s considered so rare very little attention is spared in the medical community and even less in the media.

As a link on the blog Melissa started for Kyle says, “rare diseases aren’t so rare”.

Particularly when it’s your unique and precious child who has one.

Type III Gaucher children lack a vital enzyme preventing fatty acids from building up in bones, liver, lungs, spleen and brain, swelling each cell beyond tolerance levels.

pictures-043 The toll it takes on their tiny bodies, bones and brains is catastrophic.

Gaucher’s symptoms depend on which of the 3 types your child is unfortunate – or fortunate – enough to have. Symptoms range from “minimal” to total disability and death before 3 years of age.

Typical of Type III (the sub-group Kyle was diagnosed with): Swollen stomach (enlarged liver and spleen), fragile bones, eye displacement and later, neurological involvement and death.

Can It Be Treated?

Kyle has already been started on painful and expensive enzyme replacement therapy. There have been many long-distance trips to specialists and hospitals. The family is now gearing up for a 1 ½ to 3 month stay in Toronto, miles away from home, while Kyle undergoes a high-risk bone marrow/cord blood transplant at The Sick Children’s Hospital.

Melissa has put her name on the waiting list to stay at Ronald McDonald house, so she can be with Kyle throughout – but there is a slim chance that will work out, since there are hundreds of families on the waiting list, and not nearly enough room. She and her husband will have to cope with hotel fees, travel expenses, food, laundry, time away from work, and still pay all their regular bills while Kyle undergoes and recovers from this high-risk and grueling procedure.

I too once had to spend time in another city while my 2 children both underwent testing and treatment for a rare genetic disorder, and I know what it’s like to have to cope with staggering medical-crisis expenses that banks don’t give loans for – when all you want to do is be there every minute for your very sick child.

What Can I Do To Help?

So while Melissa is focused on setting up the new charity organization, “Neuronopathic Gaucher Foundation” – dedicated 100% to raising money directly for research – and organizing an online fundraiser for it, I’m breaking with business protocol, and putting a link to Kyle’s blog on my site.

Please visit it, and make sure that Kyle’s is not just a statistic brushed under the invisible rug of “rare” diseases. Please make sure his story is not just a small, still voice, unheard, and silenced far too soon before its time.

There are things that can be done to help children with catastrophic, painful, life-ending diseases like Gaucher’s.

But not if we don’t make it our solution too.

UPDATE: Melissa and Jeff have decided not to go ahead with any radical surgery at the moment. She explains why in a blog post, It’s Official