My daughter Cobi was born with PFFD. I had 2 sons at the time and when she came into the world I was estatic. She was placed beside me wrapped up and I had 20 minutes of absolute delight until the Doctor checked her over and then came the bomb shell.
At the time I remember thinking "these things don't happen to me". I cried and my husband cried and I remember saying with my shallow mind "I always dreamed of my daughter being a talented athlete as I was, but that will never happen now". 18 years later she is representing her country in Wheelchair basketball and has travelled overseas 3 times to compete. She would never have the opportunities she has had if she was "abled bodied" and next year she hopes to to compete at the Para Olympics. She is a far better athlete than I could have ever been. When she was born I discovered the truly important things in life.
She is my hero. Sure she is a little 'cow' and at times we have a very volitile relationship but she never fails to amaze me. She has never complained once in her 18 years of life about her disability. She knew from a very young age that people were looking at her because of her leg. When she was old enough to realise that it made me angry when people stared at her she would say simply "Mum its not my problem, it is you that has the problem with it". She always plays down her disability because really what she wanted and still wants is to go unnoticed. She has been "noticed" every day of her life. I think that is why she loves her wheelchair basketball because she is around others with disabilities and she is just one of the crowd.
It breaks my heart when I think of the time she did swimming lessons. She had the Van Ness Procedure at 4 and in her words light heartedly she would say....." Not only have I got a short leg but now it is on back-to-front." At swimming lessons it was common for kids to swim under water with their goggles gawking at Cobi's leg. I could see Cobi looking and cringing, trying to hide her "little leg" behind her so they could not stare. It broke my heart but I could never let her see it. I watched it all from afar. She never made eye contact with me and she never said a thing to me. (meanwhile I wanted to jump in the pool and bash someone).
Cobi finished school last year and moved to Brisbane to access more training for Wheelchair basketball. She has started work part time but this is increasingly reducing due to back and leg pain. She is spending time in a wheelchair for relief. Throughout the years Cobi has never complained about chaffing or any other pain associated with her disability (I hate that word because it is so much more about ability). Mind you she would complain about a scratch or a pimple but never anything about her other pain.
We have never come across another person in Australia with PFFD managed by the Van Ness Procedure. Although we have not looked until now. I don't know what planet I was on but I had never given it a thought before and Cobi, well it would never enter her head. Cobi has met a boy in America with almost an identitcal condition and management as herself. We would love to hear from anyone with similar scenario's.
Cobi's PFFD was quite significant. She has no hip and little muscle in that buttocks which gives her an unstable hip area and a large gait. It is this I feel is causing her pain in her back etc. Please can anyone give me stories about similar experince
Cathy Jones
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Hello Cathy,
Reading your story was like reading about my own life. My daughter is only 9 but she has PFFD with rotation plasty she had at age 2. She also has no hip and little muscle in that buttocks which gives her an unstable hip area and a large gait. She is now complaining of foot and knee pain on her good leg and I am just waiting for it to start in her back.
I found out in utero that she had this condition, which was a blessing because by the time she was born I could just enjoy her. I was able to do all my research before she was born. But the feelings were all the same. And I too automatically thought of all the things I imagined would be out of her reach. But she has amazed me and still amazes me every day. She is a great swimmer and yes the other kids also gauk at her, she played soccer for a short while and is in gymnastics now.
I never bothered to search for anyone to relate to about my childs diagnosis. And my Maddy has always had lots of friends, so I didn't think to look for someone who could relate to her. But now I am regreting that. My little girl came to me last week crying and asking me to find her a friend "Just Like Her". She said she has friends but none of them understand how she feels. So like any good mom, I am on a search! And when I read your story it really struck a chord in my heart. I know that your Cobi is older then my Maddy but it would be a great inspiration if she could write to her about how she handeled those difficult times or maybe even send pictures of her playing sports. Showing her "Abilities". You both sound like amazing people, and it is very comforting to know we're not alone.
April
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Dear April,
What can I possibly say. I am so so so sorry that I somehow missed your return comment about your daughter Maddy. That was 10/10/2007 and I have just stumbled across your comment whilst googling my daughters name ie Cobi Crispin.
Cobi would love to correspond with your daughter Maddy and I'm sure she would be of great benefit to her. As I once said to Cobi's teacher when she was about 13 years old "We don't know how it feels to be a teenage girl with a artificial leg ". This is so true and I think especially being a girl it can be difficult with all the "body beautiful" images out there. I know Maddy is not there yet but I'm sure Cobi has been through similar experience throughout her childhood that she could relate to with Maddy.
Next week Cobi will be in Beijing China representing her country (Australia) in Wheelchair basketball in the 2008 Paralympic games. I will be a very proud mother in the crowd there to cheer her on. She has travelled the world and had wonderful experiences through Disabled Sport (I remember my sister suggesting disabled sports when Cobi was just a new born and I was horrified) . No way I thought.
Cobi is her happiest when she is playing basketball. She always just wanted to be "one of the crowd" and not stand out. When she is with her team mates who have an range of disabilities (from paraplegic to a missing foot), she is totally in her comfort zone. She doesn't stand out and is just one of the crowd.
Cobi came out recently and said bluntly to me and her father that she will eventually be using a wheelchair more and more. She lives in Perth Western Australia where she trains and is quite at ease using a wheelchair to get around. Due to her hip and back pain she tries to save these areas as much as she can by keeping off her feet. It is interesting to note though that she would never use a wheelchair here in Mackay (her hometown) where she has grown up. She would not even use a walking stick as an adolescent because she did not want to stand out.
I never really thought about the wear and tear on Cobi's body as she grew up. She played abled bodied sports and I thought "give it a go". Swimming is the best as there is no strain but I now realise that everything else probably does more damage in the long run.
Cobi has matured into a beautiful young lady. Although we are very close she has never spoken openly to me about the feelings she has experienced throughout her life. She has always downplayed things (again to be as normal as possible) but also I think she was protecting my feelings. I am sure you know that Maddy's hurt is your hurt a hundred times over. Cobi has always been aware of this even though I have tried to hide it from her. Children are very smart.
In the next month Cobi will be busy with the Paralympics but will be home for a few weeks in October. Let me know if you would still like Cobi to correspond with Maddy. Feel free to Google her name and check her out.
I wished we had someone else to talk to as Cobi was growing up. I have spoken to only two women who were amputees at a young age and both have said their teens were soooooo difficult. (they are now in their 40's but I do think disability is now just a regular part of society and more acceptable). It never seemed a big deal to Cobi but I fear that it may have been and she just got on with it. She has always had great friends that failed to see any difference between them and herself. Sure there will always be an ignoramous out there that would comment but that only made Cobi a stronger person.
I hope this is not too long in coming. If so you have probably found someone else out there that can help. The main thing is that Maddy is feeling ok with herself. Do not hesitate in emailing me on catherinejones61@hotmail.com. I would love to be in touch.
cheers Catherine