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Personal Stories

Shanes trying a new ortho

Hello all we have had no hope with ortho Drs or shriners

first they said it was nothing maybe a shoe lift and thats it then he is going to be feet shorter on left side and amputation only option then shriners said it will be 5/ 6 inchs shorter on left side and amputation was the way to go but then they sent report to Ortho and primary Dr that says it is estamited at 3 inches shorter so fed up with stuff going crazy!!!!!

She made it to the top - Mt Kinabalu

Further to my post a few days ago, Emma SMS me earlier today and said 'yes I made it'. So how's that to be standing at the top of Mt Kinabalu, age 13 with PFFD and a prosthetic leg with your school mates! Yes I do know that there are a number of disabled mountain climbers with prosthesis ... but when it is your own child born that very special day not so long ago, and you've really wondered (and worried) about their lives, and the opportunities they will get (or you think they will have to fore-go when they were born), it is still pretty darn neat to hear her say 'yes I made it'.

Tema is doing well

My son Tema was born with PFFD on the left leg. Prosthesis is only one way at present. Our first and second prosthesises were made in Germany by Dr. Nader and Spoerer.

This is the first:

Emma age 13 - off to climb Mt Kinabalu on Monday

Mt Kinabalu is the highest mountain in South East Asia and is situated in beautiful Borneo a 2.5 hour flight from Singapore.

Emma, her twin brother Zach and a group of 20+ sports leaders from Tanjong Katong Primary School in Singapore are to set off on Monday to climb the mountain. Emma has one extra bag than the other kids - a spare prosthesis in case her main one breaks.

My Precious Kaiah

My nine month old daughter Kaiah was born with unilateral pffd of the left leg. I have gotten more information about her condition by doing research over the internet than I've gotten from the doctors. We are so scared and terrified of the word amputation which is the only option Shriners has given us (although we've gotten two other opinions locally here in Richmond Virginia that lengthening is very possible). Right now the difference in her legs is one and a half inches estimated at full maturity to be six inches. We just want what is best for her to have a healthy life!

My Son JJ

I have this wonderful son born with PFFD. We have been treated at Sinai Hospital in Baltimore at first by Dr. Paly and later by Dr. Standard. We now need another surgery but my insurance company bailed on us. Does anyone know where I could possibly turn for assistance. I have some money saved up but it is nothing compared to the cost of the surgery.

Thanks Tamica

I need help with growth charts!!

My family Dr. and pediatrtian are trying to figure out the best way to track Brooke's growth and weight. She is a bilateral, so I am in the hunt for...or how other bilaterals, have been measured and weighed......HELP!

Hip Replacement... CRAZY

It's been a while since I've written anything.... busy with work, kids, and art.

Doing fine at 32

I really do not know much at all about PFFD other than that my girlfriend has been trying to figure out why i am the way I am and discovered PFFD. I was born 3 months premature to an insulin dependent diabetic 17 yr old mother in 1977. I had cleft palate deformity and problems with my lungs and no thighs. i am not sure if they knew about the thighs at the time due to all of my other problems. Both of my parents, being teenagers did not want to be saddled with me and split up within a year of my birth leaving me with my wonderful grandparents. I did not leave a hospital for 3 months.

Julian is turning 3!!

His birthday is in March and he is growing into such a little boy!!! Active as anything and is constantly telling me to "Check it out!" Whatever "it" is...

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