Gill’s Story

Conditions » Fibular Hemimelia » Our Stories » Personal Stories

I was born in 1962 and at birth was diagnosed with a congenital deformity of my lower right leg.  It was much later that I was told it was called Fibular Hemimelia.  I know this was difficult for mum and dad at the time.  Mum felt a lot of guilt, but she has been my back bone not allowing me to wallow in self-pity, encouraging me to do what I could and not what I couldn’t and to push myself to the best that I could.

As a child growing to an adult with this condition, I hoped my story would give hope and inspiration to parents with a child with the same condition or another condition affecting lower limbs, or even to children/young adults affected themselves.

I had lots of experimental surgery to help correct the effect of this condition which in my case was the absence of the fibular, right side ankle bone and small toe.  Also, anatomically the foot wasn’t properly formed.

When I was 12 I was offered leg lengthening surgery which in my mind was the gateway to a new life, a new and normal leg.  Hopefully getting away from wearing a built-up shoe and lower leg calliper.

I had the surgery in September 1976 which gave me about 2” in length.  I don’t remember much about the time but the memories I do have are not bad or distressing ones.

I still have a leg discrepancy as I carried on growing slightly after the surgery, without the surgery I would now have a discrepancy of about 5-5.5” which would have been very difficult to have managed.  I don’t now wear a raised shoe or haven’t since the surgery probably because of vanity! I have odd sized feet and wear Clarks shoes in the main as they do an odd size scheme.

This discrepancy and the abnormal joints have resulted in lots of wear and tear and the advancement of osteo arthritis in my ankle, knee and hip joints.  I cope quite well and must use elbow crutches when mobilising.  I have had numerous other minor surgeries in comparison since 1976 to correct problems as they occurred.

I do however want to end with a positive – I have had a great life.  I held down a responsible job until about 14 years ago, when I had to take ill-health retirement which was difficult at the time, but proved to be a positive move.  I have been married since my early 20s and we have a wonderful son who leads an independent life.  I am very creative and am a competent embroideress and knitter.  I have a good group of friends and enjoy a good social and family life.  I also drive and have done since my early 20s.

Finally, I probably like most “children” have been and continue to be resilient.  I have in the main taken in my stride what life has thrown at me – it hasn’t always been easy, and I know there are challenges in the future to face, but I don’t worry about them today.  I am also a Christian and that has always been an important part of helping me get through difficult times, despite this I always try to feel blessed and grateful for what I have and not what I don’t.

If you have a story like Gill’s we would love to hear from you.  Please send your stories to kerrie@steps-charity.org.uk