I am not sure if you know who I am...so let me introduce myself. My name is Shana Kagan and my son Jed, who is now 12 had CRPS when he was 10. He was admitted to Red Cross Children's Hospital for treatment and in a few months following his inpatient Ketamine infusions and months of special physio, he was able to walk again and now is CRPS 'pain free' and back to his old self.
At Jedi Tedi, we are working directly with our pain clinic to help them improve their knowledge and treatments with pain diseases in children, all of which are very complex and of course as we know, the most complex is CRPS.
Jedi Tedi is to help us prevent children from suffering like ours did or like they do in the world from these horrid diseases to give these children and families a voice and a chance to prevent the trauma of going through this experience, feeling so alone and helpless.
If you would like to be part of this, then we would update you on any news and protocols about CRPS, so that we can fight for our country and continent and world to improve the awareness of these diseases that children suffer from and ensure that they are directed to the correct doctors and get the correct treatment, in a shorter space of time, instead of being pushed from pillar to post and even sometimes not believed at all. This should not be happening in our day and age.
We also want to start speaking to the medical doctors and the medical aids and possibly the government, to recognise this disease and to establish a code/number for CRPS and allow Ketamine to be administered as the drug of choice, if necessary all these things are not available to our CRPS kids and many others.
Jedi Tedi is taking the next step and we are sending Sr Angie and Rukaiya, to London in November for a Pain Symposium, the cost is huge, so if anyone wants to make a suggestion as to how to collect some funds we would be pleased to hear!
The hospital and the UCT pain clinics are also donating.
We need the world to know that our children are ok and that others can be helped. In the USA, the kids are told they have no hope of walking again, this is not mostly true and we all need to ensure that doctors will not say this in the future.
Also we will have a mom's meeting as soon as we can...
So please link others who you know have been through what we have so we can help others.
I am very passionate about NOT having children and families suffer like we did...