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Old 11-01-2011, 10:36 PM
Patricia Patricia is offline
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Join Date: Jun 2010
Posts: 25
Default National Foundation for Scoliosis Kids

Hi everyone,

I've met some wonderful people on Scoliosis forums - some of them have become very dear friends to me! It's the one beautiful thing that comes out of this horrible disease, that there is so many caring and wonderful supportive people out there.

I would like to raise the issue on this forum of something that has been on my mind for years...... We have so many wonderful organisations and foundations out there that help kids with all sorts of terrible illness.... such as Cancer Camps, Burn Camps etc etc.....

I see a need for a Foundation to be set up so kids (and parents alike) can have support (face to face) as they go through the Scoliosis Journey. It can take years from wait and see, to Braces, to waiting lists for surgery, to surgery itself and the recovery period afterwards.
I would love to see a "Camp" of some sort, for kids to come together (and obviously a parent attend as well), where these kids can have an opportunity to see that they are not alone, that there is other kids going through exactly what they are coping with. Kids can share stories about how they coped (the ones that have been down that road) plus along the way a bit of "down time and fun" for these kids who go through hell.

It's not easy being a young vulnerable teen, having to face so much pressure as it is without the burden of living with Scoliosis. I have NO IDEA how to go about setting this up... and I know logistically people are spread all over Australia. But thought I would post this and see if many heads together can come up with some ideas! A rich benefactor would come in handy right about now... LOL!

Any suggestions or ideas would be great. I have a few of us "scoli mums" from this forum interested... so perhaps we could use this post to register interest if we ever do succeed in getting something off the ground.

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Old 11-01-2011, 11:04 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Posts: 396
Default Re: National Foundation for Scoliosis Kids

Hi Patricia,
Count me in. I would be happy to donate my time to a worthy cause like this. A Wealthy benefactor would take some research, but is not unrealistic depending on the plan. Keep me posted on any outcomes. I sometimes feel that adults could do with something like this as well.
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Old 12-01-2011, 02:20 PM
Christine Christine is offline
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Join Date: Mar 2010
Posts: 268
Default Re: National Foundation for Scoliosis Kids

Yes. Count me in too. As an adult who has had this condition all of my life it I have no doubt would be a great support and resource for everyone. Feeling alone and isolated has been awful. But this forum is a great community and it should be taken further, as per your suggestion.

No idea how to get something rolling though. Maybe start with a national get-together?
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Old 12-01-2011, 03:15 PM
Dom's mum Dom's mum is offline
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Posts: 122
Default Re: National Foundation for Scoliosis Kids

Count me in too. Would be so good to have something for these kids (and adults). You are given a diagnosis, treatment options and then sent away to cope. Surgery is life changing -yes, it is a positive but you didn't chose to have scoliosis in the first place! I remember Dominic saying "I will wake up and never be the same again." What do you say to that? Thank goodness for others we "met" on this forum.
My few thoughts from previous fundraising experience are:- you need to do things properly but don't want to get bogged down in officialdom. Someone high profile can help. Am I right in thinking the actress Georgie Parker has scoliosis? It would be good to be able to offer some support and fun, even as simple as giving the kids a special outing before surgery? We organized go karting, tennis and laser shooting for Dominic with family and friends. Not to rub it in but things he wouldn't be able to do for a while.Trouble is resources that are already stretched with surgery gaps make it difficult. Adults having surgery could have something nice like a facial? Little things but an acknowledgement and a treat.
Getting together would be great. Wonder if some where like Camp Quality would let others use their resources? Sorry I talk too much but just a few thoughts!
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Old 12-01-2011, 08:16 PM
tracy tracy is offline
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Join Date: Jul 2010
Posts: 129
Default Re: National Foundation for Scoliosis Kids

Im in also! What ever I can do to help...just let me know. Ive also found some wonderful support here even though I dont post much. Some of the ladies on this forum helped me get through a very difficult time before during and after Ems surgery

Forever grateful
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Old 13-01-2011, 09:20 AM
Dr Scoliosis Dr Scoliosis is offline
Join Date: Apr 2009
Posts: 187
Default Re: National Foundation for Scoliosis Kids

Concerning support groups for adolescents with scoliosis

Patricia, thank you for your post and, indeed, you raise a very important aspect of the care of children with spinal curvature.

First, may I say that we view this forum as a form of "support group" and we trust that this is helpful to those who participate. However, one can appreciate the importance of face-to-face contact for adolescents and their parents when a family member is facing a major treatment program.

It is to be acknowledged that scoliosis and kyphosis treatment is largely centred at teaching hospitals and particularly children’s hospitals. Many years ago the Dr Scoliosis on duty started a support group which proved to be successful. Surgeons are very busy people and have little time for professional activities outside their working hours. For example, a support group can meet only out of hours, so to speak – that is, in the evening.

The approach which was used was to enlist the assistance of the Social Work department at a large teaching hospital. Social Work students, who are usually female, as part of their education undertake what is called a "placement". This is usually in some form of health-related activity for several months. A student was contacted through the hospital and the related university. The project took off very well indeed and it soon became clear that the most important ingredient was enthusiastic mothers and so the group became self-sustaining. Obviously there are variations on what has just been detailed.

To take matters further a parent should make an appointment with the surgeon looking after their daughter/son to see if there is a possibility of taking action along the lines suggested.

Good luck.

Dr Scoliosis
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