Thursday, August 3, 2017

Some inspiration from India

I had planned on personally giving C. this week a hydrotherapy session at the pool I swim in every day. I've watched years of her therapies and figured that by now I could tackle it myself. For years I've dreamed of doing so when the therapy pool at her school was closed for vacation. But good intentions were as far as I got.

One reason was the challenge of getting her there and the other was my reservations about using a barely heated pool vs. the well heated therapy pool.

Now, with her caregiver here to help me. it seemed feasible. The therapy pool will be closed for the next three weeks and I really am curious about how C. would react to the water. If she'd respond well, it would mean a huge savings of money.

So I was suitably psyched up and set aside Thursday for our session. Then one of her nearly-healed pressure-sores re-erupted with redness all around the center. The wound clinic team reopened it, prescribed a fresh course of oral antibiotic and forbade swimming for at least a week.

This is exactly one year after the blasted sore first erupted! That's got to be a world record for persistent pressure sores.

The other "good" news is that the government's department of health has responded to our request for a raised dosage of CBD and one bottle per month of THC.

It was "Nothing doing!"

I'm flabbergasted. This is supposed to be one of the most progressive countries in the world with regard to medicinal cannabis and a leader in research into its benefits. What gives?

We'll see what the neurologist has to say about this verdict. I dread having to cope with C.'s seizures without any THC.

But I won't end on that negative note.

I have a soft spot for success stories starring people with disabilities. Remember that remarkable Argentinian kindergarten teacher?

This story hails from India and is as much about a plucky young woman with Downs as it is about her devoted parents who gave her a restaurant of her own to run. All three of them have a message for other parents of children with disabilities and for the children themselves.

The story is all the more remarkable against the backdrop of the general plight of Indians with disabilities and specifically with Downs Syndrome.

The video is at

From a World Bank report:
India has some 40 to 80 million persons with disability. But low literacy, few jobs and widespread social stigma are making disabled people among the most excluded in India. Children with disabilities are less likely to be in school, disabled adults are more likely to be unemployed, and families with a disabled member are often worse off than average.
And the plight of those specifically with Down Syndrome:
Downs Syndrome affects 23,000-29,000 children born in India every year. Though the numbers are alarming but there is very little open dialogue on this topic in India. Though it is not fatal, not in the developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.
India has the highest number of people suffering from Down Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness, and obsolete medical and technological facilities... Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44% for those who have congenital heart disease [Source]

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