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Which advice would you give to someone who has just been diagnosed with Sanfilippo Syndrome?
See some advice from people with experience in Sanfilippo Syndrome to people who have just been diagnosed with Sanfilippo Syndrome
Advice to the parent of a newly diagnosed child. Breathe. After you've taken a breath, reach out to Team Sanfilippo....we can help talk you through these days and make you feel a little less alone. We've been doing this for decades now. We know the life, and we know and understand fully what you're going through. You are not alone xo
Posted Nov 6, 2019 by TSF Inc Team Sanfilippo Foundation
The advice I found most helpful at the time of diagnosis is, "Take one day at a time!" Also, as much as the children resemble each other and mirror so many of the mannerisms, they are still very individual. Do not compare your child to others and assume they will take the same path. There are no absolutes other than it is still a terminal disorder. All of the other variables are just that, variables. This means your child may or may not see that symptom. Your child may live much longer than another, or suffer at an earlier age. Do you best to raise and see your child as themselves and not the illness.
Posted Jan 1, 2018 by Danielle 3160
Keep enjoying life and who your child is regardless of what the books and docs say! Every child regresses at a different pace and new research is coming along every day ! Don’t let the diagnosis stop you from providing your child with every opportunity possible !
Posted Feb 25, 2019 by Patty Jesse 3000
Take each as it comes and build precious memories.
Posted Nov 3, 2019 by Anne-marie 2500
