I feel that these CRPS kids need a voice and us CRPS mothers need to be heard, because I feel that we are the only ones that actually know what our children went through and what it felt like and the absolute horror of the unknown. Lucky we were that we were directed to Red Cross, but only by luck and that is not good enough. For the rest of Africa and the World, the kids suffer much longer than ours and are told they will be cripple for life and will never get better. To me this is just ignorance.
I have read and been told many times that CRPS in children is supposed to have a good prognosis when diagnosed early, obviously without any other major complications. But why then is this not done? Where is this prognosis and who is carrying it out? Even though Red Cross Hospital is carrying it out, it is not recognised medically in our country for any other hospital or private Doctor to do. This does not help a lot of other children who have not been lucky to be pushed in the direction of The Red Cross Hospital.
So now I cannot keep quiet. Jed knows and my other son is ok with it, I do ask them their permission, I would not do it if I felt in any way it would harm my family, we have been through enough, but I do feel we can help others, and I do think that we have done this already. My husband is also supportive, he also went through this CRPS journey.
Jed is occasionally called in to chat to a CRPS kid and just knowing he is better, helps them become more positive.
I speak to moms all over the world about how they should be fighting for help as their kids lie cripple and unable to move or unable to wear clothes, or eat. How children's CRPS spreads full body after a time, with so many other complications, some before the CRPS, some after, all have been passed from pillar to post by ignorant others who do not know the disease or who misdiagnose, or who do not even believe the children.
I have heard some real horror stories. The longer these kids suffer, the harder it is to treat. GOSH, the top London Peadiatric hospital, told a young 10 year old CRPS boy Charlie, that he was too ill for them to treat, because his allodynia was so bad he could not wear any clothing. The hospital told the mother that he should go home, try to get better and then come back when he was rehabilitated. Not sure what other underlying disease brings on that kind of reaction, but as far as I am concerned, none should.
So Jedi Tedi started with Jed and I making a few Tedis and then saying a few words of hope and motivation on behalf of all those kid suffering, and the reaction was incredible! We have sort of rolled on from there and I feel that my passion is just getting stronger as I have more contact with these moms from all over. We realise that there is no one fighting the cause, in this country or any other. So I will keep going!
I will keep selling and sewing the Tedis, and I will keep looking after the Pain Unit at The Red Cross Hospital who need to keep progressing and learning. I will keep fighting until it is a recognised and treated childrens disease so that children like Jed will not have to suffer like he did. And us moms will not have to watch with utter hopelessness and suffer with them. So that all these families do not have to live with this terrible trauma of not being supported by a society we would think should be concerned.
I will never forget one of the Sister's words at the Red Cross Hospital, when she said these children have achieved so much through this disease, that they are the future leaders. Having seen and spoken to many CRPS moms and kids I have no doubt that this is the truth.