Tuesday, May 20, 2008

Almost 6 Months Too Late (but what the heck)

There was a time when things weren't really going for us back then when Zaki was born. Still, we had to find sources of strength, hope and inspiration in nearly all places we laid our eyes and mind on. Fortunately, we found those both offline and online.

Having friends, relatives, loved ones and medical personnel for support and help did get us through a lot. And never did I discount the possibility of music to soothe our aching selves. And as if on cue, I was able to find my way back to the Pale Fountains and to a sanctuary where people who were likewise touched by Monsieur Head's music kept the flame of a certain musical taste we could all relate to, alive.

Oh, how I deeply regret not being able to give my timely appreciation last December. Just so that I will always remember their kind words which I failed to acknowledge properly because of Eedious. Shameful.

"Zaki, call them Dad's kindred souls". Boss that.


Thank you for the way ...

Thursday, May 01, 2008

Appeal for CAH kids

Been having a really hectic week and going about completing Zaki's requirements before he gets officially enrolled in school this June.

But now to more important matters.

Just so you might know, Zaki and about 80 other kids who suffer from CAH need daily medications in order to live. Zaki takes two kinds of those daily and like the others would have to take the medicines for the rest of her life to be able to control the negative effects brought about by having this condition.

Unfortunately, those medicines are not available for sale in the Philippines. But thanks to kind souls, we get to receive donations of these medicines and distribute them under the support group which I am a part of.

For about a month now, we've ran out of hydrocortisone and too bad, our order from the local affiliates who we are working with, still isn't available. Zaki's stocks are also quite few and we cannot afford to lend some as what we've done earlier this year. As a result, most kids (who belong to families who live well below the necessary comforts) are now put under risk and are forced to take substitute steroids which doesn't have the same positive effect.

And now comes the really troubling part.

Our friends have already responded quickly to the appeal and sent out medicines through a courier. Unfortunately, owing to some quirks of not being exactly the same department or division but still under DHL, the courier is asking we pay an outrageously huge amount for the tax unlike in the past where we have been given exemption after presenting the required documents.

Despite an appeal that the medicines are strictly for indigents and patients, the contact person wouldn't budge and remains solidly behind payment and not working out a compromise. Now, it's really not just about money. It would be easier to pay but why should we if we think we are justified in what we are asking and besides the money could be very well spent buying additional medicines.

And so the problem persists at the expense of kids with CAH.

If you have an idea on what step we need to take, please share.

Owe you forever if you could help.