Words from Shana

April 16, 2018

 

There is nothing that works better than that solid determination to be well and walking again Not all the kids are able to do it on their own (not sure if it is a certain maturity level) but I have seen that older kids manage better without being admitted to hospital than the very young ones who struggle even in hospital more than the slightly older ones in hospital. They are all on the medication now. The older children and some of the others can somehow focus and force themselves to step into their pain and they have more drive to repair.

 

I have seen this and spoken to various families. Jed could not do this. At the start of his diagnosis, we were so overwhelmed with this unknown disease and the fact that no one could help us. At this point we allowed CRPS to take over our house.

I often wondered if we were more informed and more empowered with knowledge about this disease, if we would have had an easier journey.

 

I have realized that we would have..

What are your opinions? Being caught up in this dark place with no light at the end allows CRPS to really take hold of our families and our children.

 

A child who was fit and healthy one minute and crippled the next causes a massive cloud of despair. We panic because we don’t know how to fix it.

 

How can we fix it when those who we should depend on do not know either?

 

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