[tri-med] Re: Luke Update

The whole thing makes me sick.  If it comes to coming to the States for the 
procedure (if it is still possible), let us know.  I would love to do 
something to help.

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew

----- Original Message ----- 
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Friday, October 22, 2004 9:34 AM
Subject: [tri-med] Re: Luke Update


> ----- Original Message ----- 
> From: "Jennifer Vanderbeek"
>>>  Does anyone know if Heidi Herdman has contacted the
>> family?
>
> I don't know which families have specifically contacted Ruth - but the
> support that they have received has mainly been from individuals, (A lot 
> of
> overseas folk from what I can gather) - big groups have ducked for cover
> both there and elsewhere. Something that our Brit members were bemoaning a
> little earlier.
>
> I havent spoken with Ruth directly - I have been talking with her 
> solicitor
> (lawyer). I have offered mine/our help if she decides to pursue treatment
> overseas. I suspect however that the court order may prevent her from 
> doing
> that. I dont know the finer details but Luke may have been made a ward so
> that the court order can be enforced. That may prevent them from seeking
> help outside the country.
>
> It may also be a case that its simply too late and the pulmonary
> hypertension is now irreversible. If he needed the surgery at 5 weeks, now
> that he is 9 months it may well be too late. (hence why the doctors are
> saying he only has weeks to live) Getting him to the too late stage is 
> part
> of the reason behind the delaying tactics.
>
> Nothing is ever straight forward in these cases, but believe me I am doing
> all that I can.
>
> What angers me most is that Ruth was railroaded into this. Luke was
> transferred supposedly so that he could get a PEG. As soon as she got to 
> the
> new hospital they pulled this stunt. She wouldnt have let them move him 
> had
> she known what they were up to. And they wonder why I am sceptical of the
> medical profession. Note he still hasnt gotten a peg.
>
> "It is not how much we do, but how much love we put in the doing. It is 
> not
> how much we give, but how much love we put in the giving."
> ~ ~ Mother Teresa ~ ~
>
> Keep Looking For Rainbows!!
>   _--_|\
> /Karen \
> \ _.--._ /
>          v Karen, Mum to Alex (10 years, T-18 Mosaic)
> http://members.optushome.com.au/karens
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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