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----- Original Message -----
From: dana tierney
To: CF-Community
Sent: Sunday, February 08, 2004 4:09 AM
Subject: Re:soliciting...
yeah? nope I haven't, hadn't heard of them... (dammit jim I'm a web designer
not a... whatever :> )
But I will, thank you very kindly for the suggestion. We were thinking we
should go ahead and research transportation in case he is seriously ill, and for
future reference in case we hear again about a kid who is in urgent need of
help. It has happened before a couple of times and we were quite helpless.
Good news, I have made contact with the mother... someone has given her a
cellphone that has some sort of text messaging to email interface so she knows I
am trying to talk to her but said the message was cut off. I guess there is a
limit to message length??? Tried again as several short messages. I can't get
through on this number she gave me; I get a message that the destination is not
available for subscriber dialing. I thought it was the funky little
long-distance company that we use here at the office but I got myself an AT&T
phone card and it's still telling me the same thing. If anyone knows what that
is about pls let me know :) Otherwise I guess she will have to go to the
internet cafe if we can't get the text messaging to work.
The email I got from her says that she got him in to the doctor for the chest
pains he was having and they are trying a different antibiotic: "WINTOMYLON it
is a Urinary antiseptic but once he finished the bottle he will go back to
COTRIMOXAZOLE 400mg." He still needs the ultrasound and labwork though; it seems
these have not been done in quite some time and kidney damage/failure is a very
real possibility with this syndrome. My best friend died in 2000 of cardiac
complications of prune belly syndrome, which is how I became involved with the
group.
Thanks everyone who is helping to make a difference for this kid :)
Dana
> Dana, have you tried Miracle Flights for Kids? They are a non-profit
> organization that arranges for kids in other countries to be taken by
> plane to where they can get treatment. They might be able to help too.
> I think that they pay for the plane ticket ...
>
> Judith
> ----- Original Message -----
> From: "dana tierney" <[EMAIL PROTECTED]>
> To: "CF-Community" <[EMAIL PROTECTED]>
> Sent: Saturday, February 07, 2004 9:08 PM
> Subject: Re:soliciting...
>
>
> > We are up to $233 actually received at the paypal account. I am
> still trying to reach the mother, who probably has *some* money
> available for this, but realistically she is likely to need to buy
> medecine and honestly I think he is going to need to come to the
> States for treatment.
> >
> > But! I am not a doctor, and even the doctors are not commenting
> until they see the tests. On the bright side, one of the prune belly
> people who doesn't have much money does have some time for this, so
> she is gonna help out with researching what airline might donate a
> plane ticket and stuff like that.
> >
> > Dana
> >
> > > So are we still a little short? Come on guys, I'm sure a couple
> of
> > > you have a $20 laying around somewhere not doing anything useful...
>
> > >
> > > Not to be an ass, I'm just playing and all.
> > >
> > > I'll kick in the difference if we can't come up with it here.
> > >
> > > Share the love! :)
> > >
> > > -----Original Message-----
> > > From: dana tierney
> > > To: CF-Community
> > > Sent: 2/6/04 3:39 PM
> > > Subject: Re:soliciting...
> > >
> > > update: $25 from a HoF list regular, $35 from one of the
> volunteers
> > > at
> > > prunebelly. New total = $224. Was not able to reach Paul's mother
>
> > > last
> > > night, will try tonight.
> > >
> > > Dana
> > >
> > > > (I figure that will get some clicks)
> > > >
> > > > Anyway... Paul Estares is sick now.
> > > >
> > > > He's this Filipino kid I've been trying to get to medical help.
> I've
> > >
> > > > been making phone calls and sending emails on behalf of his Mom,
> and
> > >
> > > > it seems that she can get discounted care, but not free. No
> Medicaid
> > >
> > > > there. Social services there is saying, well, his case is
> > > complicated.
> > >
> > > > I am getting this from social service organizations over there
> too.
> > > It
> > >
> > > > seems they have decided that keeping him alive costs too much.
> His
> > > > parents are not rich people. The dad drives a taxi. They live
> > > outside
> > > > Manila in a neighborhood where the nearest phone is several
> blocks
> > > > away.
> > > >
> > > > Paul was supposed to get some lab tests late last year, which
> had to
> > >
> > > > be cancelled when his parents could not come up with the money -
> 15,
> > >
> > > > 000 pesos, which turns out to be $268 US. His Mom wants me to
> get
> > > him
> > > > to the US for treatment, but I figure, first let's just get the
>
> > > tests
> > > > done. Maybe he only needs a different antibiotic. So I am
> passing
> > > the
> > >
> > > > hat, here and over at prunebelly.org.
> > > >
> > > > C'mon you guys, let's just do it :)
> > > >
> > > > If he turns out to need more medical care than a change of
> > > antibiotic
> > > > then I will make some more phone calls and send some more emails
> and
> > >
> > > > try to get some airline to donate a ticket and find out what he
>
> > > needs
> > > > for a medical visa (unless Tim can tell me). But who knows,
> maybe
> > > > that's all he needs and we can solve the whole problem right
> here,
> > > > before the PBSN people even get back to me. I would get some
> grins
> > > out
> > >
> > > > of that.
> > > >
> > > > Some cynic out there is probably thinking that I am being
> scammed. I
> > >
> > > > don't think so. I have talked to the pediatric urologist that
> did
> > > > surgery when he was a baby. One of the doctors I sent email to
> has
> > > > managed to get the mother on the phone, and that doctor thinks
> the
> > > kid
> > >
> > > > needs to get to the States. I don't want use HoF bandwidth to
> post
> > >
> > > > all the emails I have about this, but if anyone would like to
> look
> > > at
> > > > them, I do have all of them here.
> > > >
> > > > I have started a Paypal account for the PBSN Children's Medical
> Fund,
> > >
> > > > under [EMAIL PROTECTED] Paul is the current applicant.
> > > Should
> > > > the account receive funds in excess of what is needed for Paul's
> lab
> > >
> > > > tests they will be applied to his medical bills if applicable.
> If I
> > >
> > > > wind up with a surplus beyond Paul's medical needs I will let it
>
> > > earn
> > > > interest and use it for similar children. The issue of prune
> belly
> > > > children in third-world countries, and in the US without
> insurance,
> > >
> > > > has come up before from time to time. I will pay out from the
> > > account
> > > > only to a medical facility or pharmacy.
> > > >
> > > > By the way the PBSN (prunebelly.org) is a non-profit
> organization
> > > duly
> > >
> > > > registered with the United States federal government, and all
> > > > contributions are tax-deductible as charitable donations from
> your
> > > > United States taxes. I will make sure that any donor that wants
> one
> > >
> > > > gets a pretty little receipt from our treasurer.
> > > >
> > > > Thank you,
> > > >
> > > > Dana
> >
> > > _____
> > >
> >
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