Rare Responds: Parent Advocate Advice

June 10, 2013

“Parent advocates– For those of you with a child diagnosed with a rare disease, what advice would you give to another parent with a newly diagnosed child with a similar rare disease?” We took our query straight to the rare community via our Facebook page.  Here’s what you had to say!

“Trust your mother’s instinct overall else…”

– Elizabeth

“Best advice I got….trust your doctors, but don’t believe anything they say.
Question everything!”


“Never listen to a doctor who will list the things your child will never do!! Always be willing to accept help!!!”


“Don’t be afraid to voice your feelings. Knowledge is power. Surround your child with a medical team that is willing to learn about the disease. Advocate for your child. Keep records of your child’s medical results, notes, etc. in a binder that you can take with you to appointments. Enjoy your child and count the blessings. Take care of yourself.”


“Stay positive & trust your intuition. Your child’s condition is going to test you, but your child is going to amaze you.”


“Doctors are just people. They have read a lot of books, but they have NOT read the one on your unique child because it hasn’t been written! When they give you a prognosis, remember they do not have a crystal ball that tells them the future, they only have statistics about the past and what happened to other people.”


“When Avery was alive, I carried a copy of medical records in the car incase there was an emergency that way I didn’t need to think about it. The gift of the internet for families with a child with rare disease is we are able to get support. Get involve with agencies… Both my children have died… I still feel the need to be involved…”


” Find out everything you can… will be the expert on your child’s illness. And don’t shut yourself off from the world. Make wonderful memories with your child, and yes, surround yourself with people who care about you. Also, if it is a disease which will be very life limiting, perhaps special celebrations. We had a 1 month birthday party for our son Dexter who had Zellweger Syndrome. He died 3 days later. We were so glad that we got everyone in one place to see him before he died. 
Accept help from people, they can be truly wonderful in difficult times.”


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