Caring for your Seriously Ill Child

A Resource for Parents

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Parenting a child who is seriously ill

 
 
  "Nothing I've ever experienced has been as hard as this. At least I know I don't have to do it alone. Others are here to help. With good information, and their support, we're going to make it through."

 
 


Tailor this website to fit your circumstances.

We are a group of parents and professionals offering this website in the hopes that it will serve as a source of inspiration, support and practical information. We’ve all paced the floor at 3:00 in the morning, unable to sleep because of the decisions before us. Sometimes there is so much to do and take in, it can be overwhelming. But you are not alone. There are other parents struggling with similar issues. There are professionals dedicated to your child’s health and well-being.

In this website we share stories and educational information on everything from physical care, to dealing with the medical system, from emotional-spiritual issues, to tips for talking to your parents, your employer, your child and your child’s siblings. We even have an online resource guide that will tell you about support services in your area.

You are probably taking in a lot of information right now. To help reduce the overload, we’d like to tailor this website to your circumstances. We need to ask some questions to do this, sometimes tough questions. Please select the statement that best describes your current situation. (At any time you can come back to this Home Page and choose a different situation to explore.):

 
 

  


I am searching for a cure.

  
I am beginning to wonder if we should look at all the possibilities, including the possibility that the treatment might not work.
  
I am beginning to wonder if the small chance that the treatment will cure the condition warrants the pain and distress it is causing my child.
  
My child appears to be recovering, but somehow life has not returned to "normal".
  
I suspect my child is not going to survive. I want to know how I can best support my child to live fully and comfortably in the time that is left.
  
My child is no longer alive.
 
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Download a Powerpoint presentation about this website (2.3 MB)

 
 

This website was developed by a nationwide coalition with funding from Last Acts Partnership. Site design and layout created by Let's Collaborate!
 
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