Hi I am a father of two beautiful boys the youngest one born in July 2003 with pffd.He is a dream come true. He can probably climb better than any kids without this condition and along with his older brother light up our lives. He is penned in for lenghtening in September this year. The problem is that it is very diffucult to make a final decision to go ahead with this operation. The difference to date is approx 6cm. At full growth it will be 20+ cm. Does the end justify the means? Each time we speak to our surgeon the future looks bleaker, and living in Ireland there are not many people with this condition and therefore no support groups . I,d really love to hear from anyone who has faced this and come out the other side no matter which road they have taken. Looking foward to hearing anyone,s comments and replies
Comments
active young athlete
I am a full time student, skier and cyclist. I was born with pffd and my mother choose the symes/knee fusion for me when I was 9 months old. I have been very active and successful with this birth defect. I am glad that my mother chose this way because I can wear a prosthetic without straps and there was no real pain involved or memory of my foot, no phatom pains. I hope this helps and good luck.
active young athlete
Jonezey - is that you?
If so, how's the hip? Mine still hurts from the fall at nationals. Still have fluid in the joint, it hurts to do anything - cycle, walk, dance, you name it. All the docs here are too chicken to do anything. this summer stinks so far.
Oh yeah, I'm with you - the backward foot thing is too weird - better to deal with the AK prosthetic. no phantom pain, no memory of having a foot because I never was able to walk on it. Actually less invasive in terms of musculature - once the foot is gone and the heel pad attached, all the muscles on that side work pretty much the way they are supposed to work.
Cindy (active "old" athlete)
What did you do?
louise kavanagh here, im from Ireland and have a girl pffd, she is 20 months she has her own way of going but cannot walk as there is a 5.5cm of a difference in her legs, i really dont know which option to take, i would be very interested to hear hoe you and your son got on it might help me to decide.
alan-irl new account
sorry alanf was old account and as you may have seen we opted for lengthening with mr moore . tough decision and a lot of ops and tears , at least one down . best of luck with making a decision .alan