The last three weeks (since the People article on Lilly and Maya) have been quite exciting for me. To learn what my condition (no longer called a disability) really is called and to know that there are so many people who either have, or have children that have PFFD, has made me feel much more complete and much more at peace with myself than I ever have before. Actually emailing and talking to Lilly and Maya's Moms has brought me to a point of unbelievable respect and admiration for my own parents, who have died. To think that they did, 56 years ago, with no idea what was wrong, all the right things and gave me a normal, happy, charmed and blessed life definitely puts them on a pedestal in my book.
I thank God each day for the blessings He has bestowed on me -- I also pray for all of us affected by PFFD to whatever degree -- that we may always know there is someone else out there who knows exactly who we are!
Sheila
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I agree
This has been great for me too. To get to talk to others about my son's condition and them know what im going through Its just great. what treatment options did your parents decide to be best for you? I hope my son is happy with whatever i decide and know its all because I love him and want whats best for him.
your post
Hi Cassidy--My parents actually did NOTHING -- I am 56, so that many years ago, the doctors really had NO IDEA of what to call this condition, or what to do about it (they did talk about amputation etc, but my parents decided against it). I guess, though, now with all the options available, you need to just trust your instincts about your son, depending on the severity of his PFFD. When I look at the stories on this website, I do not think that I am in bad shape at all, so I am grateful that my parents just let me BE and never treated me any different than they did my brothers and sisters.
Sheila McLaughlin