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My e-mail friend Julia
I want to tell you about my E-mail friend Julia.
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.
Julia was born with PFFD on her left leg, aitken calass D so that her left knee is at hip height. Her thighbone is 2 inches long and her lower left leg and foot are "normally" formed.
Her righ leg is completely absent from the hip. She also misse two fingers of her right hand.
She is in her mid fourties. She had never surgeries on her left leg.
She can stand and "walk" on her left leg and uses underamrcrutches in the house than. The rest of the time she uses an electric wheelchair.
Julia is a very attractive woman who does not want to hide her handicap. She she does not consider herself as handicapped, just "differently abled". She is a very happy person, has a lovely husband and two children.
Herewith a few pictures of her.
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Comments
Just another thought...
Hello Everyone!!
I loved the photos and the wonderful life story of Julia and her successes! Hopefully those of us who end up with this condition will all benefit from knowing that no matter what your life will be what you make it. And in her case it looks like she definately defined who she was and is going to be. A loving mother, wife, and good friend is an example for all of us to live up to.
I would like to just add one more thought though as far as waiting to let your children decide what they would like to do. I would suggest that you at least get an opinion about any complications that can happen if there is a misalignment in the hip, knee or ankle that over the years might cause some kind of abnormal wear on those joints. You don't have to have anything done, but just get someone to take a look at an xray to make sure that if you do decide to wait that the end result wouldn't be worse than making some type of brace or something that can make everything move at the proper angles to prevent any further damage to those critical areas. Once those areas wear down at the wrong angles there isn't much that can be done after that point. Being informed and helping your child have the best life they can is really why we are all at this website, and I thought I would just add this little fact to make sure that our children get the best care they can so they can have a shot at as full of a life as possible without any unnecessary pain or extra proceedures down the road.
Thanks again for the wonderful post and pictures, and hopefully by sharing all of our thoughts and discoveries we can help future generations have an easier time and a better life. God bless!!
Sincerely,
Chuck Berg
Julia
Hi Steph, even though Julia doesn't want to write on this site herself, it's great that you can share her story and show us some pics.
As a person with bilateral pffd and missing half my left arm it is interesting to see Julia's right arm, as i don't think i've ever seen a photo of ulnar/radial hemimelia. Julia has the same kind of dimple on her right arm that i have on my left remaining leg caused by fibula hemimelia.
I would personally have to agree with Chuck's comment that at least consult with medical professionals as soon as possible in cases of pffd as there could be various different ways to proceed to potentially improve the life of the person. At least then you have the options, but could still decide to do nothing.
You feel that leaving a child alone, the way they were born is the best option, let them decide when they are an adult. This may well mean that possible treatments are too late, with wear & tear etc.
There is no right or wrong here, just what individual parents feel is best for the their child and their childs life ahead.
Julia has managed with no surgery, and by the looks of it doesn't use prothesis either, good on her, that works for her.
Options would probably have been a lot different for her 45 years ago, also depending on the country she is from. I think leg prosthesis would have been her only option anyway.
Dave Bailey