Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 ----------------------- Re: [Groupmail] From: heather@... Date: Tue, March 11, 2008 1:14 pm To: groupmail@... -------------------------------------------------------------------------- Update: Hi everyone.....I just got off the phone with and she asked that I update you all on . He had his jacket applied yesterday in Melbourne, and had to be rushed to the emergency room in the middle of the night for trimming. He was purple, had very low sats, and was not feeling well....I believe he had vomitted a few times, as well.... Apparently, he had developed a case of cast syndrome due to the tightness, and the chest expansion window was not sufficient (big enough), and no hole on the concavity. I know I am leaving out some very important details, but Mo can give you all of that when she can get back on line...This is unacceptable for . He is too fragile to undergo casting done wrong. Our children deserve better. I will update more as soon as I can. Please send Mo and your strength, and I will post again as soon as I hear back from her. )ISOP) > Hi , > > > > Yes I agree, we do have to go public and tell Shanice's story, so that we can make this treatment available in Australia for children like Shanice, and all the other kids who will eventually need to have surgery. At > the moment I really don't know what is going on with our funding application. It seems her specialists can't get their acts together. We see her respiratory specialist next week but haven't had any response from Dr Woodland about the funding since our initial meeting. We don't see him again until the end of the month, we can't wait that long. We feel so angry > that precious time is being wasted. They are playing with our child's life > and we can't watch and wait anymore for them to do something. This has been > going on for far too long now. It seem like the only person who gives a dam > is Dr , I received his submission yesterday, it is about 2 inches thick and contains correspondence and supporting evidence of the benefits of > the VEPTR treatment. The more we read of this life extending treatment the > more determined we are to help find a way to make it available in Australia. > One of the documents I received, mentioned briefly about the future of the VEPTR and how they are currently working on making it self expanding to eliminate the number of follow up surgeries. > > > > Do you think you would be able to put me in touch with your contact for TodayTo Night? We are getting very desperate now; the way things are going > we are not very confident we are going to get our funding so we have to find > another way of getting Shanice treated. We were even thinking of starting to fund raise now as we don't want to waste anymore time. Can you let me know how we go about it? > > > > Shellie I think you are right we do need to advocate to make the treatment available in Australia, it would be fantastic if Dr could come here > to teach the Aussie surgeons what to do. I really don't understand why they > don't support this type of treatment over here. > > > > I spoke with yesterday; she said she was going to Sydney in April to > seek an opinion from Angus Gray and another orthopaedic surgeon. She was also keen on contacting Dr . It sounds like her daughter also needs > something done quite quickly. She has been in halo traction for three months. It seems like they do it very differently in Brisbane. She has been cared for at home and also goes to school everyday in her halo walker. > told me that there were about four or five kids in halos and that one > nine year old had just come out of hers and had a fusion. It sickens me to > think that the surgeons over here think that is the only solution. > > > > thanks for your kind words I feel like we are so close but yet so far > from getting this treatment for Shanice, but we are not going to give up that's for sure. > > > > Well I better go now have to be up in a few hours. > > > > Take care everyone, > > > > > > > > I am re-sending this message, I actually sent it early hours of this morning > but it was sent back. Hope it works this time > > > > > > > > _____ > > _______________________________________________ > Groupmail mailing list > Groupmail@... > http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosiskidsaustra\ lia.com > _______________________________________________ Groupmail mailing list Groupmail@... http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosiskidsaustra\ lia.com Quote Link to comment Share on other sites More sharing options...
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