If anyone has any information on resources for a child with pffd please let me know. My son had class c pffd that will require a new prosthetic each time he out grows one. He will also require surgery. We have been turned down for medicaid twice and are currently awaiting for word back from social security. We are looking into the shriners hospital. any suggestions?
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Apply to Shriners - they
Apply to Shriners - they will provide medical care including surgeries relating to PFFD. They also provide all prosthetics. They also provide transportation to the hospital. We go to the hospital in St. Louis, they have rooms one parent can stay in for free during hospitalizations. There is also a near by house for $20 a night for other visits. I'm sure all of the locations have something similar. They are absolutely wonderful - its a real blessing.
I have to totally agree with
I have to totally agree with the other parent who has recommended Shriners hospital. They are all over the US. I would suggest going to a local Masons lodge and see what you can find out from them (they can help you get the paperwork started as well as provide other assistance). I would not have my daughter go anywhere else! They are absolutely FABULOUS!!! My daughter has had 10-12 new "legs" made and numerous surgerys as well. We have never had to pay a single cent! We would not be able to get our daughter care for her leg without them.