This is Sonia , 37 years old . l was born with PFFD and l have lived very happy and success , I am a computer engineer and happy with my job , l like to dance to treat ppl well and to be positive and optimistic. 3 years ago l married to a man is living in Canada, unfortunatley the immigration of Canada didnt accept my application to join my husband , and its because of the fact that he is a gay . and he didnt say me the truth before marriage and he cheated me .
34 years ago I was born with BPFFD level D. The Dr's informed my parents that I would never walk. However no one ever told me that. So I learned to walk in my own time. After learning to walk, I learned to run, rollerskate, ski, ride a bike, be a cheerleader, play volleyball, drive a car....etc. Why did I start out my very first entry on the website listing what I was or am ABLE to do?
My name is Maria Wallace. I am the proud mother of a 4yr. old with PFFD. Her name is Nina and she is a Uni. with a prosthetic. Nina is also a twin. She's stong and determined. Although she was born with PFFD, it hasn't been an issue. I've had it easy.She is a wonderful child. Never complains. A few weeks ago, for the first time, she told me she wanted a real leg. Talk about a wake-up call. She wants to ride a bike so bad. So, here I am. This isn't about her riding a bike. I know we'll find a way. This is about support. This is about us knowing we aren't alone. THANK YOU SO MUCH.
I am writing this short story to all parents that have emotional problems with the PFFD condition of their child. Dear parents, let your child grow up as it is born and let them decide for themselves what they want as treatment when they are grown ups.
Im am e-mailing to her for many years, She does not want to publish on this site herself but she allowed me me to tell her story.
My daughter has had fittings for a prosthesis she has her own foot so its an extension prosthesis sge is getting, she goes crazy during the fittings and it looks so awkard for her to wear i just can't see how she will manage. She is 22 months, has anyone any advice on how i can help her when she gets the prosthesis next week as i am really dreading it.
the last time i submitted our story , we were a getting ready for fitting of ilizarov to our 4 year old . thankfully we are now one week after frame removal. its good to read peoples blogs when you are going through the process, its been the toughest 5 months of our lives but really worth it. our little boy legs are almost level and since the frame came of he has not stopped running and playing which is a beautiful sight. the hardest part has been the lack of sleep as our little man hated the splint on during the night . our medical team in dublin have been great for the whole process.
Is thers any one out there that has a child with pffd and club foot? If so could you please contact me as i would really love to hear from you,
We are thinking about going to America to America to see Dror Paley, and would like to know what we are in for also we have been told we can get her a prostesis that wont need surgery or one that will need surgery, we just really dont know what option to go for, Caoimhe is 21 months at the moment.
